What I Want For Christmas ...

We need Gov. Kasich'a leadership to stop HB136 - a house bill ready for vote that allows public funds to be used for vouchers for families making $95,0000 less to pay for parochial and private tuition.

HB136 is misleading voters and will only anger Ohioans down the road when they realize they've been duped and lead astray by a small group of Ohioans and their representatives who have a political axe to grind about unions and public school education. Furthermore, they're using our children with disabilities to pass a bill that will have no impact on their ability to receive special services outside the school district due to current statues and laws.

First of all, it is the Governor's responsibility to clarify for voters that voucher money is not going to fall from the sky, the Ohio Treasury, or out of taxes currently being used to pay for public schools. He is required to be upfront about where Ohio district schools will get the additional money to give vouchers to 80,000 families making less than $95,000 & currently attending private and parochial schools. Last time I checked the census, the majority of Ohioans make less than $95,000.

It is also Governor Kasich's responsibility to inform families who believe that a "voucher" will give them direct access to special education services. That's not true. It has always been the school district representatives & IEP team (parents included) that determine "services" according to current state statutes and federal law. No voucher or state legislation can change that unless they change current Ohio statutes and federal law.

If students require special education services that cannot be provided by the school district due to their disability, federal law requires the school to provide it through "continuum of alternative services." This is how my 17 year daughter is attending a special therapy school operated by HC/dds in Cincinnati since she was school-age ready. I didn't need a voucher to do this 11 years ago because special education rights are guarenteed and protected by current state statutes during Gov. Taft's administration complying with federal law. He actually closed hundreds of state funded MR/dd therapy schools and discontinued contracts with service organizations throughout Ohio because his administration believed there was a duplication of services provided by the school districts.

By supporting and signing this bill, Gov. Kasich will be perpetuating a legacy for increasing property taxes because HB 136 turns the state’s obligation of providing a thorough and efficient “system” of public education into a private benefit resulting in unprecedented levels of voucher expansions that will have a financial impact for every school district in the state! Down the road, tax payers who pay for for public education will eventually see that Gov. Kasich doubled the tax burden. Does he want his legacy to be one where he wasted more tax payer money through repeals, lawsuits, and higher taxes by supporting and signing this voucher bill?

Ohio's Issue 3: The One that Got Away ...

Issue 3 passed by a much larger margin because voters thought the new healthcare bill the President signed off on last year took away choice? The official language of the issue said it was a proposal designed to "preserve the freedom of Ohioans to choose their health care." What if you didn't have choice before the healthcare bill was signed into legislation? What if the new healthcare bill actually opened the door for children with disabilities?

Elisabeth never had a choice about healthcare through Anthem before the healthcare was signed into legislation. Her parents were stuck paying higher premiums because of her "pre-existing condition." Never mind that that none of the claims we've filed since her birth had a single thing to do with her "pre-existing condition."

A child who survived leukemia didn't have any choice, either. The new healthcare law protected all children  from insurance companies hiking up premiums because they know they can. Parents of children surviving cancer had no other alternative but to pay the high premiums instead of looking for more affordable healthcare. They were denied from choosing a healthcare option that would give their child the best care for the little money they had.

Issue 3 actually took away the rights of the individuals choose their health care. The individuals who were paying thousands of dollars in monthly premiums just to keep their health care for their child with disability.

People (who don't have children with disabilities) wonder why we parents who have children with disabilities feel like we live on the margin in our society? We're not asking for center stage or the spotlight. All we want is a system that is fair for our children.  Issue 3 was clearly one-sided with a much broader political agenda under which none of our children ever fit in.

Respite Care Night!

Respite Care Night
Saturday, October 22, 2011
6-9 PM
... White Oak Christian Church

The Special Needs Ministry of White Oak Christian Church
is offering an evening of FUN activities for children with special needs AND their siblings. Parents can take a break and enjoy a night out!

This event is FREE but you must register. Registration will be open until all spots are filled. Children ages 0-18 are invited to attend.

For more information or to register, visit our web site: www.thewocc.com

Err on the Side of Safety

So I got this call around 3:30 pm stating in a "matter-of-fact" tone the vehicle transporting my daughter had an accident and that she's okay.

The phone call was not from the police officer or anyone qualified to verify if Elisabeth was okay. The call came from the business office of the transportation service who was notified by the driver. I didn't get any details other than "she's on her way home" and "they had to switch vans" and it's a "fender bender thing" and "I am required to notify you that there was an accident."

No big deal, right?

So I contacted  the non-emergency police dispatcher numbers to verify exactly what happened. Elisabeth is non-verbal and cannot communicate if there is something wrong with her. I heard from the police dispatcher there was an accident and no injuries were reported. The police officers were attending the scene and someone would get back with me. One hour later, Elisabeth arrived home in a  van with a dried bloody nose and blood on her shirt.

So I asked the driver what happened. He identified himself as the mechanic for the transportation company. He pointed to the driver sitting on the bench behind Elisabeth's chair.

So I asked the driver if he was okay. And he nodded. Then I asked what happened and if there was anything I should know about the impact. He was unintelligible. So I asked him, "Are you a parent? If this was your child and she was unable to tell you what happened, what would you do?"

He just looked at me blankly. The mechanic answered, "Do what you think is best for your child."

So I asked, "How was anyone able to determine if Elisabeth sustained any injuries? Was there a police officer or medic present?"

I was told, "Yes. The police officer wiped blood from her nose."

I asked, "Can anyone tell me if she hit her head or her if her chair tipped or wobbled from the impact or if it was a severe enough impact that she could have sustained internal injuries? Did she cry? Was she upset?"

No answer.

Okay, I get it. This isn't about my daughter's safety anymore. This about their procedure.

Finally, the traffic police officer returned my call.  He reported the van was traveling on the Norwood Lateral and came to a sudden stop, hit the car in front,  and was steered off the road hitting a tree. The police officer stated when he arrived Elisabeth was already off the van. She was taken off by the driver of the van. I asked, "Are you the officer who wiped the blood from her nose?"

He said, "Yes. I asked the driver if he thought she was okay."

So I asked, "How would he know? This was the first time he picked her up. It's never the same driver with UTS.  Who determined  if Elisabeth sustained any injuries since she cannot communicate what happened?"

The officer apologized. He said, "I took the driver's word that that knew her."

So I asked, "Looking at that accident, the impact, the damage to the van and wheelchair, would you have taken my daughter to the hospital if she was your child? "

He apologized, again,   and asked, " Is she okay?"

Finally, somebody actually gets it! Thank you, God!

I told him, I'm not really sure. Her Dad took her to the hospital  to check things out. I told him, "You know it's very difficult for us to determine when things are not right with Elisabeth. I imagine it would be very difficult for a stranger to determine if  something was wrong. It's a learning experience for all of us."

I asked him, "Did you notice any marks on the wheelchair to see if there was any impact? Any scratches or dents? That would indicate something, right?"

He said that the experience really opened his eyes to the challenges many kids with disabilities have when there are traffic accidents.

After I hung up with the police officer, I called the transportation company about their "safety procedure" and shared what the police officer told me about the accident. A "fender bender" it was not.   The driver hit the car in front, and drove the vehicle into a tree. The van had to be towed.

Next, I suggested  accidents involving a child with or without disabilities should be handled by the traffic officers and medical staff especially when the drivers do not know the children or advised to say as little as possible.  The driver in this case should have said,  "I do not know this child and cannot determine whether she  is injured or not."  It should also be part of the procedure for a police officer to make a report out on the wheelchair for signs of impact or stress and also look at the straps and buckles securing the wheelchair  for signs of stress.

Elisabeth just came home from Children's Hospital. Her nose has a small cut inside so she hit something.  It  was swollen. We were told that because they did not see the typical abrasions from shoulder and lap belts, it's  difficult to determine the extent of her injuries. But, if we noticed any changes in her behavior or she vomits or if her nose starts to bleed to bring her back to the ER.  In hindsight, I recognized that at the very least she experienced something that scared her. Her diaper when she arrived home directly after the accident was full and she was soaked. If he lifted her out of the chair, he must have noticed she was soaked which indicated that at the very least, she was scared ...

Buyer Beware ...

Advice from Elisabeth's Uncle John:


While many of the financial planners are legit, there are similar groups positioning themselves as financial planners, when in reality are thinly veiled product pushers.

Blogging about special interest groups is a broad topic; families have very different needs. Just like Elisabeth, the nuances of each family is very different from others. I am a big believer in the expression how you structure your investments (i.e. trusts, and specific disciplines in investing) is much more important than what you ultimately invest in, whether it be insurance,stocks, mutual funds or annuities.

My advice here - start with the legal side of structuring assets for adult children with disabilities. This is where you need to understand structure. The investments will fall in place from there.

Valerie's Mom

I was in high school when I first heard her sing and remember the life changing interview she gave after the birth of her daughter, Valerie. Not everyone can do this with the grace and dignity that Phoebe had.


Phoebe Snow dies at 60; singer of 1974 hit 'Poetry Man'

Geriatric Care for Mom

CARING FOR MOM

Location: The Grove Banquet Hall (9158 Winton Road)

Free Seminar!

Register by calling 522-1154, or register online

Presented by Micki Fehring, RN, in partnership with West College Hill, North College Hill and Springfield Township Senior Centers

Caring for a parent comes with many challenges. Juggling between your child’s soccer game and your mother’s doctor’s appointments - managing to balance it all. Whether you are one of the 42 million people currently caring for an older adult or are just approaching the years when its time to take care of mom, this seminar will held guide you through resources you will need to make difficult decisions easier. Join us at Springfield Township’s Grove Banquet Hall to learn more about the vast options of care and tour through resources available to caregivers. Geriatric Care Manager, Micki Fehring, RN, will cover information on:

The stress of multi-generational care
Understanding the choices in care
How to pay for in-home care
Safety and independence

You will leave this series with a better understanding of the different types of care available and will be given a take-home resource guide.There will also be a series of follow-up sessions introduced that will focus more on one specific topic.(Dates for follow-up courses will be provided at the seminar)

About the presenter – Micki Fehring has been a registered nurse for over 15 years and is currently a Geriatric Care Manager for Care Advisers by Black Stone. Her role allows her to asses a patient’s needs, present them with the best choices of care and arrange for the care to begin.

Wednesday, May 18 6:00 p.m. – 8:00 p.m. **Light dinner will be provided**

Mainstreaming or Warehousing?

"Mainstreaming theory in some case exempts the student from learning according to their ability, skill level, and developmental pattern. They will never reach their greatest potential."



I've been reading a lot of articles about mainstreaming. I see a river of difference in mainstreaming theory and mainstreaming reality.

In theory, it works only when there are plenty of available resources, time, and finances. In order for it to work for the individual, mainstreaming is a long-term  and ongoing process requiring support for  everyone in the community -- from the mayor or city manager on down.

Unfortunately today, mainstreaming reality is still  a vision involving coordination from people and organizations most of which exist on the margins of our society in terms of funding and support. In fact most of these organizations that advocate for the rights of people with special needs are not even mainstreamed into our society!

We hope that one day all our children will be mainstreamed into community life and be embraced and accepted for who they are instead of what they aren't. Planting those seeds requires tapping into  a education system that is letting go their teacher's aids  because the budget cuts at the state level have been severe and steady in Ohio since 1998.

What our government has developed for the schools as "mainstreaming" is a package deal claiming that all kids can be included in the classroom as participants and school related social settings regardless of their disability. In reality, we hope they are, but many are only visible and not included. Their needs are just being "warehoused" until they go home.

Buying into this neatly packaged "mainstream reality" involves developing an IEP (Individualized Education Plan), a 503 plan, or behavior plan. In the IEP, for example, are specific objectives and goals for the child and additional assisting technologies, therapeutic services, and adaptive aids to accommodate the child's needs in the classroom. For some children, an IEP is what separates them from the rest of the class so they can learn according to their "own ability."

For some children who are globally or developmentally delayed, children who process information differently, and children who have have neurological-diverse behaviors emerging, being in the classroom with their biological peers who are on "curriculum track" may be counterproductive or irrelevant. In this case, parents, advocates, and school district representatives should seek out alternative special education environments or services that will match the child's ability. An environment that promotes learning based on the child's ability.

When alternatives are not offered or not available or if school does not support a particular "ALTERNATIVE" service that might greatly enhance a child's special education experience, many times parents and caregivers are forced into accepting the district's school-government "mainstreaming" option. In other cases, parents and caregivers have elected to keep their child at home.

Since I can only go by personal experiences as a mother and by what I have experienced by working in schools, all I can say that most parents and caregivers are absolutely clueless about what goes on in the classroom where the child is presumed to be "mainstreamed. Many parents are clueless because their view of mainstreaming is based on the theory, not the true reality.

Not all children benefit from mainstreaming, but this information is not given to parents during meetings. In some case studies, mainstreaming in the classroom interferes with the child's progress. It might trigger sensory issues as in the case of  children diagnosed ASD.

Unfortunately there are no alternatives in some school districts. In other schools, alternatives exist but it is not supported by the school district so most children settle for mainstreaming theory which turned out to be nothing more than babysitting services or "warehousing" a child's needs until the school day is over.

Sure, once in a while the parents are invited to school-related programs where they see their child "included" with the rest of the kids and everybody goes home happy that the child is "mainstreamed" but this is where the mainstreaming begins and ends for many of our children with varying abilities.

For many of the schools offering packaged mainstreaming where children's needs are being warehoused, all I see are kids being pulled in and out of classrooms and in some cases, roaming around the school or left in "a special resources room."

I see kids who are not expected to develop or learn according to their own ability since they are also exempt from most classroom activities, tests, and given alternative assessments. Sure, they have IEPs and 503s and behavior plans, and the paperwork is getting done, but the kids are not getting any benefit from this situation because in this mainstreaming "reality" created by government and districts schools, children are not expected to do anything. Mainstreaming theory exempts some children from learning according to their ability, skill level, and developmental pattern.

Grant it, I have seen many special education environments that can accommodate a diversity of special education needs for many different children but this is not mainstreaming. This is offering separate, equitable, and equal opportunities for the individual child and I see nothing wrong with this alternative.

On eric.ed.gov website, there are annotated bibliographic records for more than 1.2 million articles about special education that have been indexed since 1966, including:

journal articles
books
research syntheses
conference papers
technical reports
policy papers, and
other education-related materials

I encourage each and every caregiver or parent of a child with special needs to read over the current research about the challenges of mainstreaming in the classroom -- specifically learning what "individualized special education" means and how their son or daughter can benefit from it.

Our understanding of mainstreaming has changed over the years. Clearly, "mainstreaming" is not for every child. We cannot build our our entire education system with a "one size fits all" model when it comes to providing special education opportunities for our children.

"The Father Factor"

                                                            (Elisabeth and her Dad)



Bobbie B. Fairfax School is presenting Dr. Robert Naseef this Thursday, March 24th at 7 p.m. until 8:30 or so. Please RSVP Diane Ritter by calling 513-559-6719 or email her at diane.ritter@hamiltondds.org

Volcanic Wheels For Wheelchairs

Just a quick update here for families and friends looking for gift ideas. The volcanic wheels for front wheels draws a lot of attention to Elisabeth. We have a set each on the Metro and her Titelite wheelchair. It also draws in conversations to her directly. People generally ask, "Hey, that's so cool, where did you get those?" We paid around $20.00 for each wheel and $6.00 for shipping. A trip to the hardware store will get you the spacers otherwise the bearing slip out and the magnetic core that triggers the lights to flash will crack & crumble which is what happened to us while on vacation just a short time ago. Fortunately the hotel maintenance crew in Miami were very friendly and found us washers that fit perfectly. The Volcanic Wheels sent us one new magnetic bearing for the one wheel that could not be salvaged.

The grande wheel will fit the front wheel of most wheelchairs. Here's contact info:

DRI Products, Inc. For Orders in US : 1 - 8 - ONLY WHEEL (1-866-599-4335)
1160 N. Central Ave #A209Glendale, CA 91202 USA

General: info@volcanicwheel.comSales: sales@volcanicwheel.comCustomer Service: service@volcanicwheel.com

(Rise Up My Darling!)

Between the radiation fallout, Japan's disasters, and the Danny Hakim's article last Sunday, I wonder if there is any hope for us or is this part of the ebb and flow of a planet spinning.

For any of you participating in that pilgrimage from St. Patrick's Church in Saul, Ireland, to Down Cathedral in Downpatrick, send a little love to Japan.

In the meantime, I'll be filling up on a little Éirigh Suas a Stóirín myself!

Happy St. Paddy's Day ya'll!

And Deliver Us From Evil...

This morning in the NYTimes, I wake up to Danny Hakim's story about group homes in New York. I don't know whether to be angry or relieved about what his investigation turned up.

It's "the nightmare" most of us live with and the reason why we hold on to caring for Elisabeth because she is the most vulnerable here.


Instead of crimes like rape being committed against them in institutions tucked away from society, the crimes are being perpetrated right from under our noses, in our own neighborhoods. Maybe it's not where we put them for independent living that is the problem. Maybe it's with whom we put them in regard to "group homes" independent lifestyles.

The issue (unfortunately) will become another political debate about how unions and state funded programs are no longer reliable. The debate will be about how we are wasting our money on government programs instead of looking at ways we can make it safer.

Our voices are never heard and drowned out by politicians who want to wittle away at government funding for our children. The same people who will never be in need of assisted living housing even though we are a nano second from becoming disabled. The same people who will have the financial resources and support to put their loved one's in the best of care. (On the flip side, we figured out that it's cheaper to send Elisabeth on a cruise the rest of her life than it would be for her to live in even the cheapest assisted living home here in Cincinnati.)


Naturally, many people tend to think that privatizing care is the only solution when in reality we just traveled down that road not so long ago in Texas. Remember when we found all those residents living in filth because the housing went unregulated and unsupervised? In fact, privatizing care will only create more inequity in housing options for our family and friends.


Instead, we should be debating the "quality of care" regardless whether it's a private or state funded home. We need to make it easy to get rid of people we suspect are abusing or taking advantage of our family and friends. And we need to do away with this mentality of "out of sight, out of mind." Visiting them once a year? C'mon, we can do better than that! I don't care how busy you are. If we don't show how much we care about our family and friends, why would we expect others to care?

We need to put our money where our mouth is.

When it comes to clothing, toileting, showering our family and friends, there should always be at least one licensed medical professional present to supervise the attendants. Not that the LMP is less likely to do something as horrible as what we read in the article, but that there is at least one person present other than the attendant when tending to the private needs of the residents.

And we have to do a better job treating the attendants and assistants with respect. Maybe we need to be more discretionary in requiring more professional screening and training than what we allow right now. It's a difficult job caring for the adult population of special needs as many parents will tell you.

Maybe the bar isn't high enough in either private or government care. Maybe our expectation isn't high enough. Care for this population is only worth it's weight in gold....

The Big Splash