IDEA: Intent Doesn't Match Reality

	SEARCH 1,000 stories, 75 discussions BROWSE 75 contents pages SUBSCRIBE to free e-mail digest
ARCHIVES \| BOOKS \| CRITERIA \| DIGEST \| HOME \| LINKS \| MAP \| MISSION \| ONGOING DISCUSSIONS \| RULES

Name: Carol Esing
Email: carol.esing@psinet.com
Date: 02 Apr 2000
Time: 13:20:05
Remote Name: bar-pm3-1-37.jvlnet.com

Story

I am a parent of a very severely disabled beautiful 10 year-old-daughter, named Ashley. I am also a Certified Rehabilitation Counselor and work for a Disability Management Company. I have been practicing in this field for approximately 19 years. I have a Master's Degree in Rehabilitation Counseling from Springfield College.

My husband and I have three wonderful children, all of which were planned; they are 27 months apart in age. Ashley was our middle child. At about 3-4 months, Ashley was diagnosed with Reflux. We noticed that Ashley was having difficulties with her vision; she had difficulties with both of her eyes working together. Out pediatrician at the time wanted to wait until she was one year of age to deal with the problem. We went to approximately 5 specialists in a two-month time frame, trying to figure out why Ashley was having so many problems. Our pediatrician helped us with a referral to a Pulmonary Specialist; the rest of the physicians were located on our own. We sought assistance from a Gastroenterologist, Opthalmologist, and Neurologist. We would not know the extent of Ashley's severity of problems until we met with the Neurologist.

During this time period, you must know that we had a very young son and we were dealing with a child who cried constantly, without explanation. We often said that she was either crying, eating or sleeping. All the Neurologist said was that our daughter would not be like her brother. I asked about the quality of life issues, and we were given no clue as to what road we would have to travel to assist this child in meeting her multiple medical and educational needs. No one gave us a manual as to the best way to handle this child's unique medical problems and fragile medical status.

I would say that we finally got this child on track once she was about about 6 years of age. (A long time of sleep deprivation, a true test of tenacity and a true test of the human spirit). We started having many good nights, more than bad nights at about the age of six.

I would learn that the true challenges would be in dealing with our school district. I knew that Ashley was going to need early intervention services (based on my training in graduate school). In the early intervention program Ashley received 30 minutes of Physical therapy and 30 minutes of Occupational Therapy per week. They decided they would restructure the program, which would only offer physical therapy 30 minutes per month. They indicated that the child could learn the needed skills by watching others. This is a child with severed disabilities with Cerebral Dysgeneis, Cerebral Palsy, Seizures, Apnea, Reflux, etc.

During this time period, we supplemented my child’s therapies through private OT and PT services. I was criticized by administrators as "providing too much therapy to my child". At this time we realized that we had a short window of opportunity for my daughter and that we needed to maximum her services to allow her to maximum her gains as early an age as possible.

My real struggles were encountered when we entered the School system. Every year since we enrolled in the school district we have encountered nothing but problems. "Extended School Year (ESY) issues" was a big concern because Ashley needed above and beyond the normal 180-day school year due to the fact that she was at risk for regression and loss of skills. One year we were not told that Ashley was eligible for her ESY program until the day before the program started. A complaint was forwarded to the PA Department of Education (PDE). The PDE did not find the school district in violation. I forwarded a Basic Education Circular (BEC) on the ESY matter which indicated that the district was required to complete an ESY IEP (Individualized Education Program) by no later than 2-28-97. After I forwarded this information to PDE, I received a response indicating that the school district was in non-compliance. Yes, we are suppose to have qualified individuals monitoring these school districts; however, in PA they are ineffective and apparently do not consider themselves responsible for enforcing the regulations.

I have participated in two monitoring processes provided by PDE. Parents of special needs students met with the monitoring teams on both occasions. The first target monitor provided results which indicated major non compliance in many different areas. The school district was advised IN ADVANCE what child’s case was to be reviewed, so the district had advance warning, and, in fact, several month to prepare their files.(Auditing of nursing homes would NOT tolerate these types of practices. They would be shut down in 24 hours if it was necessary; then why should our Education system be allowed to engage in these types of practices?) This is the way things are done in the state of PA. Our district would then be monitored by the Inspector Generals Office for backdating documents in order to come into compliance with the PA Dept. of Education.

The policies and procedures manual was increased in size from about 2" to 4-1/2". Certain areas were outlined for correction, and PCE indicated that sanctions against the school district would occur. Unfortunately, the time frame for corrections was not followed, and the sanctions were never completed, as promised. The second monitor provided similar results; unfortunately the district was cleared, but in actuality many, many children in the State of PA were not receiving the Free and Appropriate Education as promised under the guidelines of the Individuals with Disabilities Education Act. By the way, any parent associated with the Parent Advocacy Group were retaliated against because of our involvement with local legislators (3% of the children's IEP out of 1,200 were reviewed).

Recently, I had asked for a MDT-Multi Disciplinary Team meeting to discuss tests being administered as part of the RE-evaluation process. When I met for the MDT team, I soon learned that a CER-Comprehensive Report was already completed, which was absent to the testing. This CER was done by records review for the past 2 years. No updated information. I was advised by the APS Approved Private School that, "This parent cannot interfere with the CER process."

This report was obviously considered invalid. The team decided that several medical reports would be needed to be completed before the CER meeting. I took my daughter to a Dysphasia evaluation (barium swallow study to review swallowing status, oral motor clinical review; Neurology, Gastroenterology and vision evaluations. In the interim the team was to complete testing (Occupational Therapy, Speech Therapy, and Physical Therapy) and was to provide their data, specific test scores and recommendation at the upcoming MDT/CER planning meeting. The vision specialist recommended an Occupational Therapy/Sensory Integration evaluation to address the self stimulation behaviors which were getting in the way of this child’s ability to process in her education program. A Teleconference proved successful with eventual approval for this OT/Sensory Integration evaluation.

At the MDT/CER planning meeting the Approved Private School did not provide the evaluations, until asked by the parent. The evaluations were not dated, did not have specific education levels, etc. -- in fact were essentially invalid reports. During this meeting the representative from the OT Sensory integration program provided her recommendations. There was NO decision made from the group as to whether we would agree with or disagree with the OT Sensory Integration report.

The school district and the APS planned a separate meeting without the parent(s) and decided that they would not agree with the recommendations made by the OT Sensory Integration specialist. During the MDT meeting the school district purposefully misquoted the regulations on Related Services and indicated that these therapy services were medical in nature and not required by the district.

The district purposefully forgot to read the part of the regulation that indicated, "The services are needed to assist the student to benefit from or gain access to the special education program." I received the CER report and completed the parent dissent outlining all our reasons why we disagreed with their recommendations. The child had been receiving 1 hour of PT, 1 hour of OT, 1 hour of ST, and they documented that in 6 years that the child had plateaued and in some areas regressed and, therefore, they were decreasing the therapies to 1/2 hours per week, and they were not agreeing with the OT sensory integration report which recommended OT 3 two hours sessions by a qualified OT.

We have presented our concerns to the school district administration; however, we are advised that we must move forward to the IEP team meeting.

We now have a flawed CER and are moving into an IEP team meeting shortly. This is our nightmare and in the State of PA these types of problem are a common theme with parents across the Commonwealth.

In other years, we have sat in IEP-Individualized Education Program meetings, the team made recommendations for an 8 week ESY program (after a 5 hour meeting). However, the second LEA representative decided that he would have to check with the Pa Dept of Education on the Team recommendations. The team was asked to reconvene. Since the district did not document the required ESY information (which was in fact discussed), we had to reconvene the IEP meeting within 10 days.

Some parents in our district have had 8-9 IEP meetings in one year. It is a wonder that the system is bogged down and can not move forward in a timely manner? In other occasions, the documented IEP plan was not implemented.

School districts utilize due process on a regular occurrence, and the PA Dept of Education does not enforce the regulations. Not all parents have unlimited funds to pursue due process as a means to resolve their problems. We have parents who have never seen "Extended School Year" programs for their children. We have many, many , many children who have not received what is called FAPE- Free and appropriate Education. We have court ordered decisions NOT being followed by the district nor the PA Dept. of Education.

I ask anyone familiar with the education system: Was this the intent of the IDEA, Individuals with Disabilities Education Act? We need accountability, we need the Federal Government to take our concerns seriously, and we need enforcement of the current laws, WITHOUT parents having to spend all their money on due process.

This creates a lot of unnecessary anxieties so that it distracts parents from the real focus: "The Child." Is any one out their listening? Can any one make a difference? Parents and advocates for children with disabilities need answers NOW, not later. What good is Comp Education when the child does not have an appropriate education for years, and they regress and loose valuable skills? We are wasting valuable time and money, and, most importantly, our children are being harmed and will never recoup the lost skills when these types of despicable injustices occur year after year after year.

I just attended a Special education forum provided by OSEP-Federal Government for Specials Education programs. The round table discussions will be reviewed with several additional meeting across the Commonwealth of PA. Let’s see if the OSEP office takes our documented concerns seriously? We have got to help our children with disabilities get a fair chance at the best quality of life and the Free and Appropriate Education program for which they are entitled under the law.

vasya

Name: vasya
Email: alfa@gagmail.com
Date: 06 Apr 2008
Time: 06:09:35
Remote Name: 195.225.178.21

Story

vasya

Name: vasya
Email: alfa@gagmail.com
Date: 08 Apr 2008
Time: 09:40:57
Remote Name: 195.225.178.21

Story

ivan

Name: ivan
Email: delta@gagmail.com
Date: 10 Apr 2008
Time: 03:16:10
Remote Name: 195.225.178.21

Story

slava

Name: slava
Email: pinta@gagmail.com
Date: 02 Apr 2008
Time: 19:37:00
Remote Name: 195.225.178.21