Funding The Student With Down Syndrome

Student with Down syndrome

Funding the Student with Down syndrome David Huckabay CM220-03

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Funding the Student with Down syndrome Students with Down syndrome consistently demonstrate the ability to learn effectively and therefore merit adequate funding of their continued education. Established inclusive educational settings and recent data confirm that including students with Down syndrome benefits the student, teachers, peers and school system. The 1954 landmark ruling Brown vs. Board of Education and resultant legislation ensured the rights of people with disabilities to a “fair and appropriate education”. The IDEA97 Act further extended and solidified federal basis for educational rights to people with disabilities. Currently, proposed federal actions threaten to dilute a half-century of rights assured to students with Down syndrome and other disabilities. The existence of people with Down syndrome is noted in the earliest records of man. Images of people with Down syndrome first appeared in pictures in 1505. Realization that Down syndrome was a recurring entity in the general population was made in 1866 by Dr. John Langdon Down of Surrey Hospital in London, hence the name Down syndrome. He referred to the condition as “Mongolism” and its affected population as “Mongoloids”. This term referenced perceived similarities in facial structure to the Mongol people combined with established medical belief in their “arrested development”. A dozen years later others researching the condition noted its presence in many races and ethnicities, correcting these original misconceptions. In 1961 a group of esteemed doctors and researchers successfully petitioned the World Health Organization, halting use of archaic language describing the condition in favor of the term we use today, Down syndrome. In 1959 a French doctor, Jerome Jejune (lay-June), discovered the genetic origin of the syndrome. A simple error in cell division at the time of conception called “nondisjunction.” This

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error in cell division results in an extra copy of the 21st chromosome that attaches itself to the 21st pair of chromosomes. This results in the most common form of Down syndrome, called Trisomy 21, literally meaning “third copy of the 21st chromosome.” Since chromosomes normally come in pairs they are “duosomic” by definition. The 21st chromosome in a person with Down syndrome is “trisomic,” literally meaning “three chromosomes.” This “trisomic” effect is then replicated in every cell throughout the body and in every new cell created during the persons’ lifetime. The cause of this error is undetermined by researchers and scientists though current studies are in progress. Age of the mother is believed to be a factor due to increased incidence of babies with Down syndrome born to mothers 32 years or older. Conversely, 95% of all babies with Down syndrome are born to mothers under 35. With this genetic history and explanation in place, let us examine the medical, physical and mental challenges people with Down syndrome may face. Children with Down syndrome account for 1 in 800 live births worldwide, comprising the chief population of people with developmental disabilities on the planet. (“Key facts About Down syndrome”, 2004) This population runs increased risk of associated physical and medical issues such as hearing and vision defects, heart abnormalities, infection, leukemia, thyroid disorders and Alzheimer-type dementia in later life. Nearly fifty percent of all individuals born with Down syndrome will suffer an associated heart anomaly. (McDonald, M., 2002) Until recently people with Down syndrome lived a shorter than average lifespan. Increased medical understanding of people with Down syndrome leading to better treatment, management and correction of associated problems and improves average lifespan. Children born with Down syndrome and related heart conditions commonly undergo corrective surgery within days, weeks or months of birth. Other therapeutic approaches we will discuss include

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nutritional, physical and cognitive interventions. When attempting to achieve better health and longevity, people with Down syndrome may face one or many physical or cognitive challenges. People with Down syndrome sometimes present outward physical features generally related to the condition, including slanted eyes, flat face and bridge of the nose, flattened back of the head, below average height, small or “low” ears and short, broad fingers and hands. Looking at the palm of the hand may confirm the presence of a single or “Simian” crease as opposed to two or three creases of a person without the syndrome. It is vital to understand that non-disabled people can exhibit one or many of these physical features. For example; four to five per cent of children who do not have Down syndrome have a single crease across their palm; and 25 to 50 per cent of people who do not have Down's syndrome have slanted eyes, flat back of the head, small ears and flat nasal bridge. Less obvious physical issues such as hypotonia (low muscle tone) can cause instability in the joints and may contribute to delays in both fine and gross motor skills. This can contribute to delays across a wide range of physical abilities from grasping a pencil to running and jumping. People with Down syndrome also risk the increased occurrence of developmental and cognitive difficulties. These include delayed acquisition of motor skills in infancy like crawling, sitting up, standing and walking. Cognitive abilities like speech and language acquisition and short term memory suffer due to a mix of delayed physical growth, compromised immune system and related health issues like recurring ear infections. Small facial bone structure restricts speech resulting in a protrusion of the tongue. A common misconception is that people with Down syndrome have “oversized” tongues. The opposite is true; delayed growth of facial bones restricts oral space provided for the tongue. Undersized ear canals limit hearing and receptive speech abilities. The extra copy of chromosome #21 interferes with absorption of food, minerals

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and vitamins. This compromises immune systems allowing higher rates of illness in people with Down syndrome. Increased illness decreases attendance at daycare and school, delaying social and academic growth in students with Down syndrome. While one or more of these conditions may be present, the advent of early physical and cognitive intervention therapies can alleviate and diminish negative impact later in life. As stated earlier, hypotonia causes instability in the joints and can delay rolling over, crawling, sitting, and standing, walking and running. Physical therapy helpful to this condition called “compression,” involves applying pressure to the joint by pushing and pulling the limb. This exercise strengthens joints and enhances the awareness of an individuals’ physicality. School age children with Down syndrome receive extra P.E. classes and individualized physical and cognitive therapies. “Occupational” therapies focus on fine motor skills like grasping a pencil, using scissors and basic physical movement. “Physical” interventions can be enhanced by interventions in other areas such as nutrition. “Nutritional” intervention usually takes the form of “supplements,” imbibed like common vitamins. As stated earlier, the extra copy of chromosome #21 inhibits absorption of nutrients, vitamins and enzymes in every cell. In 1940 Dr. Henry Turkel began to develop nutritional therapies for people with Down syndrome. In 1986 his research was assumed by Dr. Jack Warner who began specializing in seeing Trisomy 21 patients. Dixie Tafoya, mother of one of Dr. Warner’s patients expanded the formula. Adding amino acids and removing two components, she treated her daughter with this new mixture. Researchers, doctors and families recognized the treatment, technically called “orthomolecular therapy,” improved function. They experimented and developed the formula, noting dramatic improvements when mixtures were altered to meet the need of individual patients, a method known as “targeted” nutritional intervention or, “TNI.”

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The current treatment formula, Nutrivene-D, has been successful in improving academic, physical and mental development of people with Down syndrome. In 2002, Dr. Robert J. Thiel reported to the 8th Annual Conference for Orthomolecular Medicine that research showed nutritional therapy caused significant improvements in existing patients, including; a 10-13% increase in height and weight; decrease in facial “swelling” on the average of 46%; and a 32.9% average decrease in flattening of the nasal bridge. One story explored IQ gains in children with Down syndrome receiving TNI therapy for just 8 months, showing a 10-25 point increase. Could aggressive physical, cognitive and nutritional therapies lead the charge to a new therapeutic frontier, or even, a cure? The answer came in 2001 when researchers from The Human Genome Project announced the successful decoding of human chromosome #21. In essence, creating a “map” of the chromosome and unlocking the puzzle of how Trisomy 21 and genetically related disorders occur. This event will lead to future genetic therapies for Down syndrome and related genetic disorders. Doctors predict genetically reprogramming trisomic cells to behave in a “duosomic” fashion, effectively “curing” or “correcting” Down syndrome on a cellular level. (Winter, 2002) The possibility of this therapy holds many unknowns but represents hope for any person with or without Down syndrome faced with similar challenges. Non-disabled people of average or above average intelligence commonly suffer from specific learning difficulties involving one or more of the basic processes used in understanding or using spoken and written language. These include dyslexia (written and spoken word recognition difficulties), dyspraxia (organizational impairment) and dyscalculia (difficulty performing mathematical calculations) While individuals with Down syndrome can suffer from one or all of these conditions, the syndrome itself is considered a “learning disability.” This is

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due to inherent physical and cognitive issues that cause delays. Visual and auditory impairments hinder comprehension and acquisition of information. A compromised immune system increasing illness interferes with regular school attendance. The combination of mental and physical challenges people with Down syndrome may face could be called overwhelming. Research and living examples prove otherwise. While we examine the potential difficulties that students with Down syndrome may face, we will outline how these difficulties manifest differently in individuals with Down syndrome. The range of abilities and disabilities within the population of people with Down syndrome varies as much as it does among other people. Their characteristics, abilities and disabilities, interests and achievements are what make each person unique. People with Down syndrome are not defined by the condition. Fully capable of leading independent and useful lives, students with Down syndrome progress typically along the same lines as any other learner. In general they tend to arrive at educational levels at later numerical ages than their peers and stay there longer. Gaps between students with Down syndrome and their peers widen as they grow older and until recently it was thought there was a ceiling on the age at which these students could learn. However, like many misconceptions about Down syndrome, this theory is disproved by legions of lifelong learners with Down syndrome. (“Including Students” 2004) According to The American Heritage Dictionary (1982), “Inclusion is the act of including or belonging, being together from beginning to end.” It is a belief in every person's fundamental right to join fully in society. Inclusion requires that difference is accepted and that those who do not normally participate are accommodated. However, making the word into reality requires a concerted and focused effort involving collaborative teaming, flexibility and risk-taking. Inclusion necessitates support from an array of individuals, services, and institutions. It does not

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mean that schools must take on challenges without proper supports and services. Nor does it require that unwarranted burdens are placed on teachers, peers or schools (also known as “dumping.”) A productive and successful inclusion program requires preparation, regular assessment and steady supports. The terms inclusion and mainstreaming are commonly used to describe educational settings for children with disabilities. Inclusion means that the student with Down syndrome is in the regular classroom setting for the majority of their academic time. Mainstreaming means that the child receives special education services most of the day and may be included in some limited academic activity in the regular classroom. Research proves that the best schools both academically and socially are also those that provide successful inclusive education practices. Moreover, where whole education systems employ inclusive education in classrooms the overall performance of the entire school system improved. (“Including Children” 2004) According to many experts the attitude of the school district, teachers and staff are of great importance to a successful inclusion setting. In 2004 Dr. Sue Buckley of the Down Syndrome Educational Trust stated, “The single most important predictor of success for placements is staff attitude.” Research proves preparation preceding inclusion results in more productive inclusion settings. (“Experiences of Inclusion” 1998) Current educational rights provide funding for preparation, training and support from expert sources for school systems, teachers and service providers. Services are provided through implementation of the IEP or “Individualized Education Plan.” Students with Down syndrome or any disability included in the school system have an IEP. This blueprint for education sets attainable “goals” agreed upon by parents, family, teachers, school staff and experts at an IEP meeting. The student may participate in the meeting at their own request or the request of any team member. Testing is done only with family approval. The

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team decides what supports the student needs to achieve academic and educational goals set forth in the plan. These goals are not always “at grade level” but are united to the goals agreed to by the team. Services can include speech and language therapies, occupational and physical therapies and assistance with personal needs. It can mean extra P.E.; help learning to grip a pencil, computer or adaptive devices to aid communication, sign language support, hearing aids or other services at the discretion of the team. Also provided is funding for medical support and implementation of an LSA or Learning Support Assistant. The LSA aids the teacher integrating the student in the regular classroom setting with minimal impact. Multiple LSA’s are favoured to prevent over-familiarity and dependence between the student and one person. Studies show that fostering independence through this method allows a student with Down syndrome to stay involved in academic and social activities comparable to other students. Also, evident is the fact that 50% of parents of students with Down syndrome are involved once a week at school as opposed to 18% of parents of other students. This same research indicates support provided to direct teaching staff by experts, trainers and the support team coordinator augment the success of the student in coordinated, communicative inclusive settings. (“Experiences with Inclusion” 1998) All of these provisions are designed to move with the student throughout the day to support the individual in achieving their goals and is called, “Collaborative Teaming.” A good IEP team strives to include a person with a disability to the benefit of all. The academic achievements of the student with Down syndrome are measurable using IEP goals and assessments from involved specialists, teachers and staff. However, the true impact of a person with Down syndrome upon a classroom, a school and a community is immeasurable. Here are some examples of each.

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In a sixth grade classroom on a hot summer day Chris, a 13-yar old shoots his hand in the air when the instructor poses the question, “Name something that decelerates?” His is the only hand in the classroom to be seen. His answer, “A boat” confirms that he has exhibited both the ability to’ learn and listen’, so for this day he has met his IEP goal. In a single year of attending regular classes, Chris gained two years in spoken-language skills. Chris’ mother explains her feelings on the situation, saying "That's why inclusion is so important; he will not be living in a special education world. He'll be living in our world." (Shelly, 1998) Following is a summary of a true story from an article by Karla Reid in Education Weekly. (June, 2004) This same sort of story is reported over and over again in places throughout the U.S. in the past few years. On a hot evening in June 2004, 18 year old Brittany Booth graduated high school with the classmates she had befriended since kindergarten. While seemingly an otherwise normal occurrence for most 18 year olds, for Brittany and her classmates it meant something more. Brittany, who has Down syndrome, had met the standard requirements for graduation. However, she was still eligible for services like vocational training and ongoing education prior to college. Accepting her diploma, by the law of her own state and school district, would forfeit her right to these continuing services. Her right to graduate with her childhood confidantes, friends and lifelong classmates was literally “on the line.” Then, a state senator got wind of Brittany’s situation and proposed an amendment to the law. Rallying to her cause, classmates held an awards recognition ceremony where all students with disabilities meeting their academic requirements were honored. These students got a standing ovation in the hot gym that day, the only one during the two hour ceremony.

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All of this attention prompted the Superintendent of Schools in Brittany’s district to award her a diploma while allowing her to continue to receive her mandated services until age 22. So, Brittany, an otherwise average 18 year old girl with Down syndrome got to what she really wanted; to graduate with her classmates just like everyone else. While successful inclusion examples of students with Down syndrome abound, legal provisions for their education have long existed. Beginning with the Supreme Court case Brown vs. the Board of Education in 1954, step-by-step evolution of legislative groundwork ensured to all children an “equal educational opportunity.” This was the first landmark case in the right to all disabled and non-disabled children to receive an inclusive and public education. In November of 1975, Public Law 94-142, originally called The Education for All Handicapped Children Act of 1975 was passed as an extension of the Brown decision. Here the court held that: “In these days, it is doubtful that any child may reasonably be expected to succeed in life if he is denied the opportunity of an education. Such an opportunity . . . is a right which must be made available to all on equal terms” (“United States Code” pg.1430) At the time of the passage of this legislation of the 8 million estimated disabled, school-age children only 3.9 million were receiving educational services of any kind. Another 1.75 million received “no educational services at all” and 2.5 million received “an inappropriate education.” (“United States Code”, pg. 1432) The court also realized that the cost of housing and maintaining a dependent, disabled population in potentially subhuman environments would eventually far exceed providing educational services and support to an increasingly productive, independent and socially integrated population. In 1990 the United States Senate passed the Americans with Disabilities Act, ending “discrimination against individuals with disabilities in private sector employment, all public

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services and accommodations, transportation and telecommunications.” (Wolpert, G. 1996) In 1997 the assurances originally established in The Education for All Handicapped Children Act of 1975 were further amended and solidified by the “Individuals with Disabilities Education Act” or IDEA97. This revision restates the right to a “fair and appropriate public education in the least restrictive environment (LRE)” mandate of the original 1975 act. This is now commonly known by parents and educators as FAPE. In the 1998-99 school years about 96 percent of U.S. schoolage children with disabilities were included in regular classrooms for at least some of their school day. And of that same group, almost half spent more than 80 percent of their school day in a regular classroom. While not all cases of inclusion are successful, the numbers display a level of achievement justifying continued funding for people with disabilities in regular school settings. As outlined earlier, the right to a “Fair and Appropriate Public Education” is mandated for every person with Down syndrome. Also mandated are legal and financial guidelines for federal, state and local governments to provide for these educations. “Lack of money should never be an excuse for not allowing access”, states Dr. Buckley. (2004) Indeed it is reported that $124 million in federal special education funding in 2003 to state governments went unspent (Over six million dollars in California alone.) Still, reports of parents being denied requests attributed to a “lack of adequate funding or resources” for educational supports for their child have been reported across the country. (Zuckerbrod, 2004) This necessitates that we ask some questions about these numbers. The current system has flaws, but proves it can meet its mission to provide a “Fair and Appropriate Public Education” for most children with disabilities. Still, numbers outlining the squander of mandated funds indicate room for improvement.

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Proposed amendments to the IDEA97 act currently threaten provisions vital to success of the student with Down syndrome in inclusive school settings. An example of these changes limits the number of times an IEP team can meet to evaluate a student and revise individual goals. Two pieces of proposed legislation, Senate Bill 1248 (S.B. 1248) and House Resolution 1350 (H.R.1350) threaten to alter IDEA97, affecting the current delivery system and application of funds for educational services for students with Down syndrome and other disabilities. The laws clash with each other in concept and form, conflicting requirements that teachers and educators be certified and accredited to the high degree mandated in the recent “No Child Left Behind” law. Students with Down syndrome included in regular school settings continually prove themselves successful on academic, social and personal levels. Inclusion provides benefit not only to students but peers, teachers, and entire school systems. When practiced as method, the legally mandated rights of people with disabilities to appropriate public education prove superior to less inclusive models. Funding for services and support appears to be adequate but could be jeopardized due to current proposed legislation. While room for improvements exist on a state by state, school by school, student by student basis, the successful model exists in the modern day student with Down syndrome; educated and included by society and justified by their continued acceptance and integration in the modern education system.

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References Ainscow, M, (1991) Effective Schools for All, London: Fulton. Brown, L., Long, E., Udvari-Solner, A., Schwartz, P., Van Deventer, P., Ahlgren, C., Johnson, F., Gruenewald, L. & Jorgensen, J. (1989) “should students with severe intellectual disabilities be based in regular or special education classrooms or in home schools?” Journal of the Association for Persons with Severe Handicaps, 14(1), 8-12. Byrne, A., Macdonald, J., Buckley, S. (2001) Cognitive and Academic Attainments of Children with Down syndrome in Mainstream Schools, Centre for Disability Studies, Department of Psychology, University of Portsmouth, (UK). Retrieved on June 16, 2004 from http://www.altonweb.com/cs/downsyndrome/madrid3rs.html Buckley, S., Bird, G., (2004) Including Children with Down syndrome The Down Syndrome Educational Trust, Portsmouth, U.K. Retrieved on June 17, 2004 Dissanayak, V W. (2001) Cyberguide to Basic Medical Genetics, The Human Genetics Unit on the World Wide Web, retrieved on 6/30/04 at http://www.infolanka.com/org/genetics/cyberguide/bmg-home.htm “Key facts About Down syndrome” (2004) Down Syndrome Information Network website, retrieved 6/29/2004 at http://www.down-syndrome.net/topics/keyfacts/key-facts-EN-GB.htm (May 2004) “Down Syndrome Research Expedited by Decoding of Human Chromosome 21 Second Human Chromosome Sequenced by the Human Genome Project” http://www.genome.gov/10001485 Miles, A.(n.d.) “From a Teacher's Perspective: Full Circle on Inclusion” Reprinted from ©Down Syndrome News, The Newsletter of the National Down Syndrome Congress, Vol. 21, No. 9, p. 122 MacDonald, M., Winter, E. (2002) “Interview with Liam’s Doctors” conducted in July 2002 at Children’s Hospital of Central California, Madera, Ca. “New Law Helping Disabled, Say Special Ed Advocates”, Special Education Report, Jan2004, Vol. 30 Issue 1, p1, 2p; Public Law 94-142 (1975) The Education for All Handicapped Children Act of 1975 United States Code Congressional and Administrative News, beginning at page 1425 Oelwein, P.L., Teaching Reading to Children with Down Syndrome: A Guide for Parents and Teachers (1995) Woodbine House, New York, N.Y. Reid, K (2004) Illinois Down Syndrome Student Graduates, After All”, Education Week, 02774232, 6/16/2004, Vol. 23, Issue 40

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Shelley, A (2002) “A Brave New World”, Education Week, 7/10/2002, Vol. 21 Issue 42, p46, 10p Thiel, R.J., Ph.D., N.M.D. (May, 2001) “Orthomolecular Therapy and Down Syndrome: Rationale and Clinical Results” from the 8th Annual Scientific Program of the Orthomolecular Health-Medicine Society retrieved 7/10/04 from the Riverbend Down syndrome parents Support website at http://www.altonweb.com/cs/downsyndrome/index.htm?page=orthods.html Ward, O (2004) “John Langdon Down: The Man and the Message” The Down Syndrome Information Network website. Retrieved on 6/30/04 at http://www.down-syndrome.net/library/periodicals/dsrp/06/1/019/DSRP-06-1-019-EN-GB.htm Wolpert, G, Ed. D. (October 1996) The Educational Challenges Inclusion Study Riverbend Down Syndrome Parent Support Group, New York, NY. Retrieved on June 12, 2004 from http://www.altonweb.com/cs/downsyndrome/nationalorg.html#ndss, Wright, P., Wright, P. (1999-2005) Special Education Law and Advocacy- Wrightslaw Retrieved on June 15, 2004 from http:www.wrightslaw.com Zuckerbrod, N (2004), State's Schools Return Dollars to Federal Government” Associated Press, Jan. 09, 2004