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PROFILE OF A 5 YEAR OLD WITH A DEVELOPMENTAL DELAY

Joey* can not be understood. His speech is characterized by multiple sound substitutions and omissions and it is considered 80% unintelligible. He is also clumsy. His walking is uncoordinated but he does not have cerebral palsy. He just has an issue with motor planning. He gets Occupational Therapy for this. When he plays with his legos, he is creative. If you listen carefully, you can tell that he is talking about his creations  in which a creature may escape in a convoluted contraption that sends him into space. Other  kindergarteners like him. He’s fun to be near. He doesn’t grab at toys. He just can’t be understood and sometimes he doesn’t seem to listen. His sisters have all been diagnosed with a severe auditory processing deficit. He’s still young but his mother suspects he’ll have that diagnosis soon. He has lots of supports in place, including a special ed Resource teacher in his general education Kindergarten class with 1 hour pullout for specific skill development to help him access the K curriculum with supports of speech and occupational therapies.

Joey has a disability category of Developmental Delay (DD) and his mother was pleased that he could hold on to this soft-label until age 8 since many of his issues will resolve by then. Plus he’ll have the experience of learning to read and doing math under his belt so that his IEP special ed team will have a better  idea at age 8 if he may have a ‘significant learning disability’. But Joey’s mom didn’t have the chance this year to wait until age 8. When the preliminary ‘draft’ of the proposed changes in the Virginia Department of Education’s special ed regulations was released and proposed DD elimination for the 5 – 8 year olds, Joey’s school system jumped at the chance to re-test and re-label him and more than 100 other 5 year olds with more ‘severe’ labels, such as Mental Retardation  (MR) or Learning Disability.

So what will happen to Joey? If he is in a school system that focused on research-based techniques and had ‘highly qualified’ special ed staff supporting more of his time in the general education classroom, perhaps he could handle the MR mis-label. But maybe not. He may be in a school system that has high turnover of staff or with personnel who can’t see past that negative label on him; who can’t understand that ’labels don’t drive placements’. So if you are MR, then you belong in the MR classroom with all those other MR children. So Joey becomes what he is labeled. He becomes ‘retarded’ and the bureaucracy becomes smug in letting others know  that he was that all along and now it’s proven.  He’ll spend the years between 5-8 years with that label and associating with a more homogeneous grouping of ‘flat score’ kids rather than the diversity inherent in a DD-resource or inclusion classroom. He’ll be in the ‘lower and separate track’ of public education, otherwise known as that segregated self-contained special ed room. That low IQ score at the vulnerable age of 5 years old and that more ‘severe’ label will always be in his academic record and will define who he associates with and what type of diploma, if any, he will get for the rest of his 16 years in school. He will not  graduate out of MR because he will ‘become’ MR due to low expectations for that disability category and a ‘watered down’ separate curriculum.

But Joey’s educational life may turn out OK. His mom found an advocate. They both dug in their heels with his father too and Joey got the ‘milder’ disability category of Speech Language Impairment entered into his academic records.  SLI is a ‘less stigma’ sort of  disability category. But what about the parents of other Joeys in the Commonwealth who don’t know about this option? Their Joeys will sit in low expectations MR self contained rooms with some minimal attempt at ‘inclusion’ by going to assemblies, the library, or art/music rooms. But not access to the general education SOL content or to the Reading Specialist. And due to mislabeling at age 5 by a school system team that thinks it can tell the difference at age 5 between a child with Mental Retardation or a Learning Disability, he will become what he is incorrectly labeled: ‘mentally retarded’ until he leaves the school system at age 22 years old. Not as a child who was taught compensatory skills and overcame his delays at age 8 years old.

The Virginia Department of Education (VDOE) is soliciting the public’s input until June 30 about the  special education regulations. The proposed changes are controversial and most of them are opposed by The Arc of Virginia and The Virginia Office for Protection and Advocacy. Apparently these regulatory changes were proposed because Virginia goes above and beyond federal regulation in the special education law Individuals with Disabilities Education Act (IDEA) and especially when it comes to parent involvement in the special ed process. Rather than being proud of being a trendsetter in this area, the Virginia Council for Administrators in Special Ed (VCASE) opposes Virginia-specific parent consent provisions in our current regulations. VCASE thinks that by eliminating the parent consent and involvement provisions they will cut back on the paperwork in special education. However, those of us who have taught for decades know there will always be paperwork in special education; if not the ‘double-dipping’-sort associated with tapping into Medicaid monies to pay for public school therapies because of an underfunded IDEA federal  mandate, then  the new paperwork hassles anticipated with the due process hearings that families will be filing in response to disagreements with the public schools when they no longer have a say about the speech, occupational or physical therapy being removed from their child’s individualized educational program without their permission as is being proposed in these regulation changes

School systems across Virginia have become alarmed at the number of children who are being placed in special ed programs. These proposed regulations are a misguided attempt to reduce this high percentage. For example, on Monday May 12, the Spotsylvania Co School Board voted to eliminate the  DD option for their 5-8 year olds because it was stated that this would cut back on children in special ed.  (Amanda Blalock and Linda Wieland were the lone dissenters voting in favor of maintaining the DD option for the 5-8s). No data, longitudinal included, was presented to justify this decision. It was not pointed out that no IQ test or IEP team can clearly define the difference between a ‘significant learning disability’ and ‘mental retardation’ for a 5-year old. The National Association for the Education of Young Children (NAEYC) and the Division for Early Childhood of the Council for Exceptional Children both have position statements that state “ Categorical classification during these years of 5-8 yrs old would be premature and potentially inaccurate.” Instead, lowering class sizes and bringing more ‘push-in’ special ed supports to the general education classroom, not eliminating the soft-label DD, are effective in reducing the referrals to special education. It remains to be seen if there is a connection between a higher sped referral rate and a school’s attempt to keep a high pass rate on their SOLs and make Adequate Yearly Progress (AYP) under No Child Left Behind.

Let’s continue to do the right thing for our young children and do it the Virginia way. The Virginia way is to go above and beyond. Parents and teachers have joined together for decades since 1975 to build equal partnerships through these current special ed regs. We don’t want to turn back the clock. Keep the DD option and make it align with the federal IDEA law with the age range of 5-9 yrs old. And keep those parents involved in the desired partnership of home and school by the current consent provisions. By doing this we will ensure brighter educational futures for ALL of our children.

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*Children’s Names have been changed to one. This profile is a conglomeration of features of several students but is a common scenario when a Virginia public school system (such as Spotsylvania County in August 2007)  decides to re-test and assign new (and harsher) disability categories to students between the ages of 5 – 8 years old  who had been ‘soft- labeled’ with Developmental Delay (DD).

Sue Sargeant is a 30 year special education teacher and an officer with The Arc of Rappahannock, an advocacy organization which supports persons with intellectual and developmental disabilities since 1953 in Planning District 16: Fredericksburg and the counties of Caroline, King George , Spotsylvania, and Stafford.