Ben’s First Grade IEP and Placement

In June of 1996 we had Ben’s IEP which would decide his special education placement for his upcoming elementary school years.  While we had not yet moved into our new house we had decided on the general location in county where we would be.  Based upon that, Ben was given a placement at the multi-categorical program at Elmont Elementary School.  Though this ended up not being in our district, the school was only about seven miles from our new house.  South Anna Elementary School, which was our district school did not have a program until a few years later.

 The IEP took place about a month after Ben underwent the Hawaii Early Learning Profile (HELP) which is a checklist on cognitive, gross motor, fine motor, social-emotional and self-help skills.  Here is a list of the observations just to give you an idea of where Ben was at the age of six years and eight months.

 General Observation

All areas had a scattering of skills within the 0-18 month range – some like cognitive were higher than others.  (Dennis and I were very skeptical of these results.  While we knew that the fact that Ben was non-verbal and that the cerebral palsy was a hindrance to development, we were certain cognitively Ben was well beyond the 18 month range.  The problem with the educational testing being done on Ben was that it was based upon a snapshot in time.  We found later, as everyone worked more with Ben and got to know him, they seemed to give more latitude for the physical limitations).

 Strengths

Willingness to take part in activities, very social, receptive language skills, can comply to a two-step command.

 Weaknesses

Lack of focus on certain activities (academic and walking down the hallway), very social (it’s a double-edged sword), easily distracted by others.

Present Classroom Performance

Ben is pleasant and displays enjoyment by smiling, hugging, and showing facial expressions of excitement.  He enjoys praise and interaction with others.  He wants to please and openly seeks praise.

Learning Style

Ben learns best with hands on functional experience while paired with verbal communication.  Also modeling seems beneficial both by peers and adults.

Non-Academic Areas

Ben is not toilet trained and shows no interest to attempt this independently.  When frustrated and/or tired Ben will hit at the person he is communicating with.

All in all we were happy with the IEP in June of 1996.  The team seemed very interested in getting Ben into a mainstreamed environment because it appeared to be something that would benefit him.  They designated the following as times during the day when Ben would be mainstreamed:

P.E; Art; Music; Library; Lunch; Field Trips; Assemblies; Special Activities

 

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Our New Home

Late September  of 1996 was a happy time for our little family.  After almost ten months of living in a small apartment we finally found a house which met most of our criteria (western Hanover County with a fair amount of land) and came with a price tag we could afford.  Though the house was smaller than the one we had in Charleston, it came on a nicely wooded lot which included eight acres of land.  The size of the house was really not an issue because it was just the three of us.  During our search we were uncertain about the style, given Ben’s physical limitations due to the cerebral palsy.   Though Ben was six, we were still carrying him up and down the steps.  It was just a matter of time that his size would no longer permit this.  We looked at several ranch layouts which would eliminate having to deal with stairs.  However, I’ve never been a big fan of that particular style, so we ended up settling on a colonial which had all three bedrooms on the second floor.  We knew Ben was getting stronger and we were going on blind faith that as he did, he would soon be able to maneuver the steps on his own.   Once again, Ben did not disappoint us.  Within a few months of moving in, he was safely going up and down the steps unassisted.  We did however place a pretty substantial gate at the top of the stairs in case he wandered out of his room at night.  In October we moved in and after almost a year began to unpack our long lost belongings.  It had been a year of ups and downs, but life was finally beginning to feel normal again.  Little did we know that in a few short months, life as we knew it, would change once again.

My feelings at this point:  Uncertain.  Though I was happy that we were finally settled, I must admit, I missed my life in Charleston.  Again, there is no question we did what we had to, but my old self-centered personality was reemerging.  I can remember feeling sorry for myself a lot during this period of time.  This came from dissatisfaction with my work situation.  It was clear I still had a lot of growing up to do.

One of our first pictures next to our new house.

 

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Virginia Finally Gets It Right

On Jan. 26, 2012 a historic agreement was reached by the state of Virginia and the United States Department of Justice about an investigation which had been taking place since 2008.  The subject of the investigation had to do with the state’s alleged violation of the Olmstead Act, which requires that individuals with disabilities receive services in the most integrated setting appropriate to their needs.  With five training centers that serve the intellectually disabled, Virginia has continued to work under the archaic model of institutionalization, as opposed to developing a strong network of community based programs which have been proven to be both more effective and more cost efficient.  Originally, the investigation centered on one location, the Central Virginia Training Center in Lynchburg.  However, by the time the findings letter was published in Feb. 2011, light had been shed on the failure of Virginia’s whole system.  With 6,000 people sitting on waiting lists to receive Medicaid services, half of whom are considered to have urgent needs, the state continued to support people in these institutional settings at a cost three times more than if they were being served in community based programs.

After almost one year of negotiations an agreement was announced during Virginia’s short annual legislative session.  The uncertainty of what the agreement would entail initially made the budgetary process more challenging than normal (if that could be possible).  However, the bottom line is, Virginia has agreed to close all but one of the institutions and expand community based programs.  In addition, there is a verbal commitment to work toward clearing the waiting lists which grow at a rate of 800 people per year. 

All of this sounds wonderful for the disabled community, but the heavy lifting has yet to begin.  If the transition of people out of the training centers is done without a strong community based system already in place, this whole effort could be a monumental failure.  The state must spend some money to subsequently save money.  Our lawmakers are under constant pressure from special interest groups of all shapes and sizes.  “Give us money!”  “Stop spending money!”  One thing we all should keep in mind; our most vulnerable citizens, the disabled, were the one group of people who the founding fathers said should have special consideration from the government.   

 

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Growing Stronger and More Independent

Ben’s partial year at Henry Clay Elementary was a very special time.  At the age of six, he was just beginning to build his strength enough to stand unassisted and we knew that it was just a matter of time before he defied all the experts and began walking on his own.  His special education and kindergarten teachers, Mrs. Squyers and Mrs. Unger, were very kind and made sure Ben was included in as many activities as his very short attention span would allow.  They attended many plays and book readings put on by local residents; after which I would get a report on exactly how many minutes Ben would stay engaged in the activities.  Every improvement was celebrated by all.  This year was particularly special because it was the year he met Doris.  Doris was the aid in Ben’s special education class, and a person with which he built an especially close relationship.  She ended up following him throughout his elementary and middle school years until her retirement.  Doris had a gift that is rare even among people who spend their entire careers teaching children with intellectual disabilities.  Her gift was an ability to show a child just how much she loved him while at the same time being firm enough to let them know that they must behave themselves.  Doris’ arrival on the scene could not have come at a better time.  As Ben got stronger physically his stubborn, independent streak began to grow.  It was at this time that Ben began to hit.  At first it was swipes of the hand when he was being asked to do something he didn’t want to do.  However, over the years this became more of a problem as he grew bigger and stronger.  Doris was one of the few people who Ben never seemed to “test” with this new behavior.  To this day I don’t know what she did that made the kids respond as they did, but like I said, she had a gift. 

 In March Mrs. Unger’s class participated in the spring talent show.  They all wanted Ben to take part and made sure he attended all the practices so he would know exactly what to do.  Doris was right there with him the whole time.  I’ll never forget the night of the play when the class got up to sing their song.  Ben walked right up there with Doris’ help and stood with the class as they sang.  Though he didn’t sing, he did all the hand gestures (with Doris’ help) in unison with the class.  To say the least, mom was in the audience crying her eyes out getting stares from everyone around her (“Good Lord woman, it’s just a school play!”).  Little did any of them know; this was something that in my wildest dreams I never thought I would see.

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Planning Our Estates

The other day I was sitting in our local Arc meeting and the conversation turned to a topic that concerns many of us who are caring for a son or daughter with special needs; especially those of us who have been lucky enough to have secured what I call the “golden ticket”; or the Medicaid waiver.  This waiver gives us access to programs that enrich the lives of our loved ones.  This topic of conversation had to do with what we as parents need to do to plan our estates to make sure that our sons or daughters do not lose access to these programs due to inheritance or gifts.  I stress once again that my concerns are all about access.  I certainly believe that it is my responsibility as a parent to provide for Ben as long as I can, which will hopefully be long after I’m gone. 

Along with the possible loss of benefits, there are other challenges we face when planning for our children’s future.  Who can we trust to manage our children’s money?  Most often that responsibility would fall to a sibling.  Then we are faced with the worry that we will over-burden our other child, or children.  Or, what if there isn’t a sibling who would be able to handle the responsibility?  If there are siblings how do we fairly divide our assets, while being sure that our child with a disability has enough to meet his needs?  These are all pressing questions that we must deal with when planning our futures.

Obviously, none of us have a crystal ball, and we can never be entirely sure what the best answer is for our particular situation.  Some parents with a child on public assistance believe that they need not worry about that child’s future and arrange for everything to go to their other children.  However, in today’s world, with a government that is almost out of money, how can we be sure that there will be adequate, if any future public assistance.  In that event, again we are faced with the responsibility falling on the shoulders of siblings or other family members.

 A few years ago before taking a trip overseas, Dennis and I decided it was time to join the ranks of responsible adults by putting together an estate plan in case we were both simultaneously hit by a bus.  After a phone conversation with our attorney we realized our special circumstances precluded us from being able to pull down a “fill-in-the-blanks” Last Will and Testament from Legalzoom.com.  We actually needed to set up an appointment so he could go over the different options available for greatest protection for Ben.

This would be my first exposure to what is called a “Special Needs Trust”.  As the attorney explained, this would be the vehicle we could use to help manage Ben’s inheritance since he will never have the capacity to do so himself, while preserving his eligibility for public assistance through Medicaid and SSI.  Ben will inherit his share of our estate through this trust and a named trustee will manage how the money is spent.   In the future this trustee may, or may not be one of Ben’s brothers.  Only time will tell.

Strict rules which are laid out in the trust agreement apply with a Special Needs Trust.   The money spent from the trust on behalf of the beneficiary is restricted to certain items for the care of the individual.  Misuse of the funds can trigger a reduction in public benefits.  That is why the decision on who will be the trustee is an important one.  This particular Special Needs Trust is referred to as a third-party trust, meaning it is funded by sources other than the beneficiary.

Another type of Special Needs Trust is called a first-party trust.  This would be appropriate if the disabled person had a well-meaning “Rich Uncle Joe” who designated money in his will for his niece or nephew.   A nice gesture, but such an inheritance can put benefits and access to programs at risk.  To protect against this, the inheritance can be put into a first-party Special Needs Trust; meaning that it is funded by the beneficiary.

The rules on how the funds in these trusts can be spent and how those dollars spent may, or may not reduce SSI or Medicaid benefits are both strict and complicated.  My recommendation is to find a good attorney who specializes in this area for your particular state; and find a trusted friend or family member to serve as your trustee.

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