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Developmental Disabilities: A Public Health School Issue

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1 Developmental Disabilities: A Public Health School Issue

2 What are Developmental Disabilities (DD)?
Severe and chronic interference of a persons functionality which is attributable to a mental or physical impairment or a combination of mental and physical impairment. Manifested before the person attains age 22 is likely to continue indefinitely

3 What are Developmental Disabilities (DD)? (Continued)
Results in substantial functional limitations in three or more of the following areas (self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, economic self-sufficiency) Reflects the person's need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services which are lifelong or extended duration and individually planned and coordinated. (Haring & McCormick, 1986)

4 How Prevalent are Developmental Disabilities?
About 17% of U.S. children under 18 years of age have a developmental disability. Approximately 2% of school-aged children in the U.S. have a serious developmental disability Developmental disabilities are: a diverse group of physical, cognitive, psychological, sensory, and speech impairments that begin anytime during development up to 18 years of age. In most instances, the cause of the disability is not known. That’s why it’s important to understand what factors increase the chance that a child will have a developmental disability and what can be done to prevent the condition. State and federal education departments spend about $36 billion each year on special education programs for individuals with developmental disabilities who are 3-21 years old.

5 What are the Major Developmental Disabilities?
Autism Mental Retardation Cerebral Palsy Seizure Disorder Let’s look at each of these disabilities.

6 Let’s Look at these Disabilities

7 What Characterizes Autism?
Autism is diagnosed if the person exhibits symptoms listed within each of three domains. These are (1) Qualitative impairments in social interaction, (2) Qualitative impairment in communication, and (3) Restricted, repetitive, and stereotyped patterns of behaviors, activities, and interests DSM-IV (American Psychiatric Association, 1994), autism provides lists of symptoms for each domain, and it states how many symptoms must be present overall and in each domain for the diagnosis to be made. The criteria also stress that the symptoms must be marked and must result in gross and sustained impairments. The criteria have been fine-tuned to the point that "the evidence for its validity is stronger than for any other psychiatric disorder in childhood" (Rutter and Schopler, 1988, cited in Rutter and Schopler, 1992). Most autism experts would agree that for "classic" cases of autism, DSM-IV is an excellent diagnostic system. There are individuals however, who present with symptoms clearly resembling those of the more classic autistic cases, but for whom the diagnosis cannot be made, either because they have marked symptoms in only the first two domains but not in the third, or, less frequently, because their symptoms are not severe enough to meet the diagnostic criteria for autism, even though they may still be handicapping to the person. These are persons who have been described by others as falling within an autistic spectrum (Rutter and Schopler, 1992). Evidence that there may be a "broader phenotype" in autism has been supported by family and genetic studies. Landa et al. (1992) constructed a Pragmatic Rating Scale which they used to study the parents of autistic children, comparing them with a control group of parents who did not have an autistic child. The pragmatic scores of the parents of the autistic children were significantly greater (more abnormal) than those of controls. The pragmatic deficits in these parents were considered to be milder but conceptually similar to the social deficits in autism. A monozygotic/dizygotic twin study by Le Couteur et al. (1996), in which one or both twins in each pair were autistic, concluded that in monozygotic twin pairs discordant for autism, many of the nonautistic twins had language impairments and social deficits in childhood which persisted into adulthood. The authors concluded that the phenotypic manifestations of autism are broad and can encompass a wide range of severity. Using an investigator-based family history interview designed to rate affective reciprocity, social play, friendships, and other social communication behaviors, Bolton et al. (1994) studied 198 parents and 153 siblings of autistic children and 72 parents and 65 siblings of Down syndrome children. They found increased family loading for both autism and more broadly defined pervasive developmental disorder (PDD) in the families of the autistic children. More recently, Piven et al. (1997) confirmed and extended Bolton's work. In 25 families with multiple-incidence autism, they demonstrated higher rates of social and communication deficits and stereotypic behaviors in the families with autism, compared with families of Down syndrome children.

8 Is There an Autistic Gene?
Duke University Margaret Pericak-Vance and her collaborators have found evidence of chromosomal defects that may be linked to autistic spectrum disorder Individuals with this disorder display a combination of behavior abnormalities that may include failure to make eye contact, social withdrawal, lack of language, and repetitive behaviors such as rocking or head banging. Doctors believe that the disorder begins during development of the brain, possibly even before birth, and that the change prevents affected people from properly processing sensory information from their environment. The collaborative group of scientists, which included researchers and clinicians from Duke, the University of South Carolina, and Johns Hopkins University, located and collected genetic information on more than 100 families with at least two autistic children. By comparing the genes from parents and siblings to the genes of autistic children, the scientists were able to narrow their search to a few small pieces of chromosomes. Confirmation that a small region of chromosome 15 is duplicated or deleted in some autistic children (November 1999 issue of the journal Neurogenetics). Confirmation that another genetic variation in chromosome 7 also predisposes children to autism. The Duke researchers are demonstrating that autism is a complex genetic syndrome that may actually turn out to be several related disorders, each with its own individual treatment. For example, when the scientists looked at the children's behaviors, they noticed a pattern of similar behaviors in some of the children. Some had speech delay, lack of social skills, and "stereotyped" or repetitive behaviors, which seemed to cluster together with a specific genetic defect. In addition, these children had seizures and hypotonia, or low muscle tone, characteristics that are not normally associated with autism. These children all had a duplication of part of chromosome 15.

9 What is Mental Retardation?
Characterized both by a significantly below-average score on a test of mental ability or intelligence, and By limitations in the ability to function in areas of daily life, such as communication, self-care, and getting along in social situations and school activities. Mental retardation is sometimes referred to as a cognitive or intellectual disability.  Children with mental retardation can and do learn new skills, but they develop more slowly than children with average intelligence and adaptive skills. There are different degrees of mental retardation, ranging from mild to profound. A person's level of mental retardation can be defined by their intelligence quotient (IQ), or by the types and amount of support they need. People with mental retardation may have other disabilities as well. Examples of these coexisting conditions include: cerebral palsy, seizure disorders, vision impairment, hearing loss, and attention-deficit/hyperactivity disorder (ADHD). Children with severe mental retardation are more likely to have additional disabilities than are children with mild mental retardation.

10 How Common is Mental Retardation?
Mental retardation is the most common developmental disorder About 1% of children ages 3-10 years had mental retardation 1.2 of every year-old children had mental retardation. Mild mental retardation was 3 times more common than severe mental retardation. To learn just how common it is, CDC is tracking the number of children with mental retardation in a five-county area in metropolitan Atlanta (Georgia). This activity is part of the Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP). In another study, CDC used data from the U.S. Department of Education and the Social Security Administration to find the number of people with mental retardation in the United States in The study showed that about 1.5 million children and adults (ages 6-64 years) had mental retardation. The highest rate of mental retardation was found in West Virginia and the lowest rate was found in Alaska.

11 What Causes Mental Retardation?
Mental retardation can occur at anytime in the course of human development It can be caused by a genetic abnormality, injury, disease, or deprivation These causes can happen while in the whom, during the birthing process, or during childhood For many children, the cause of their mental retardation is not known.  Some of the most common known causes of mental retardation are Down syndrome, fetal alcohol syndrome, and fragile X syndrome, all of which occur before birth. Other causes that take place before a child is born include genetic conditions (such as Cri-du-chat syndrome or Prader-Willi syndrome), infections (such as congenital cytomegalovirus), or birth defects that affect the brain (such as hydrocephalus or cortical atrophy). Other causes of mental retardation (such as asphyxia) happen while a baby is being born or soon after birth.  Still other causes of mental retardation do not happen until a child is older.  These may include serious head injury, stroke, or certain infections such as meningitis.

12 Can Mental Retardation be Prevented?
We do not know how to prevent most conditions that cause mental retardation There are some causes that can be prevented Fetal alcohol syndrome (FAS) is one such cause Some metabolic conditions, such as phenylketonuria (PKU). Parents and doctors can find out if a child has one of these conditions through a simple blood test or heel prick.  Newborns in the United States are tested soon after birth, but different states test for different conditions.  Parents can request that their baby be tested for all conditions that have tests.  Children that do have these conditions are usually treated with medicine or put on a special diet.  If the correct treatment is started soon enough after the child is born and continues as long as needed, the child will not have mental retardation.  phenylketonuria (PKU) A genetic disorder in which the body lacks the enzyme necessary to metabolize phenylalanine to tyrosine. Left untreated, the disorder can cause brain damage and progressive mental retardation as a result of the accumulation of phenylalanine and its breakdown products. Galactosemia An inherited metabolic disorder characterized by the deficiency of an enzyme that is necessary for the metabolism of galactose. The disorder results in elevated levels of galactose in the blood and, if untreated, can lead to mental retardation and eye and liver abnormalities. Another cause of mental retardation that can be prevented is kernicterus, a kind of brain damage that happens when a newborn baby has too much jaundice. A condition marked by the deposit of bile pigments in the nuclei of the brain and spinal cord and by degeneration of nerve cells that occurs usually in infants as a part of the syndrome of erythroblastosis fetalis In some newborn babies, the liver makes too much yellow pigment called bilirubin.  If too much bilirubin builds up in a new baby's body, the skin and whites of the eyes turn yellow.  This yellow coloring is called jaundice.  A little jaundice is not a problem.  It is actually very common in newborn babies and usually goes away by itself.  Some babies, however, have too much jaundice.  If not treated, these high levels of bilirubin can damage a baby's brain.  Kernicterus most often causes cerebral palsy and hearing loss, but in some children it can also cause mental retardation.  Kernicterus can be prevented by using special lights (phototherapy) to treat babies.

13 How Can We Respond to PKU?

14 What is the Cost of Mental Retardation?
During the school year, about 600,000 U.S. 6- to 21-year-old children with mental retardation received special educational services, at a cost of about $3.3 billion.  Although it is hard to estimate the costs of caring for children with more serious forms of mental retardation, the costs may be as much as 10 times higher than caring for a child who does not have a disability.

15 What is Cerebral Palsy? Cerebral palsy is a disorder of movement or coordination caused by an abnormality of the brain Almost 70% have other disabilities, primarily mental retardation More than 80% of people with cerebral palsy developed it either before they were born or before they were a month old. In many instances, the cause of the brain abnormality is unknown. About half of the people who have cerebral palsy need to use devices—such as braces, walkers, or wheel chairs—to help them get around A recent study in California of the extra economic costs associated with cerebral palsy and 17 other birth defects, such as Down syndrome and spina bifida, showed that cerebral palsy had the highest lifetime costs per new case ($503,000 in 1992 dollars). Half of these costs are borne by families, who often find it difficult to obtain all the services they need to help their children. The average annual prevalence rate for cerebral palsy in Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) is 2.8 per 1000 children (3- to 10-year-old children, ).

16 How Does the Law Protect School Age-Children?

17 What is the Lanterman Act?
Guarantees the right to services and supports to help individuals diagnosed with developmental disabilities live an independent and productive life. The Lanterman Developmental Disabilities Act ("Lanterman Act" or "the Act") is the law that guarantees people with developmental disabilities in California the right to services and supports that will allow them to live a more independent and normal life. The Lanterman Act begins with section 4500 and runs through section 4846 of the California Welfare and Institutions Code. The services and supports must meet both the needs and the choices of each person individually.

18 What are the Rights Guaranteed Under the Lanterman Act?
Treatment and habilitation; Dignity, privacy and humane care; Participation in an appropriate program Prompt medical care and treatment; Religious freedom; Treatment and habilitation services and supports to help you achieve the most independent, productive and "normal" life possible; Services that protect your liberty and are provided in the least restrictive (most integrated) way; Treatment, services and supports in natural community settings to the greatest extent possible; Participation in an appropriate program of publicly supported education regardless of the degree of disability; Freedom of religion and conscience, and freedom to practice your religion; Freedom from harm, including unnecessary physical restraints, isolation, excessive medication, abuse or neglect and hazardous procedures.

19 Lanterman Rights (Continued)
Social interaction and participation in community activities; Physical exercise and recreation; Freedom from harm; Choices in your own life; The opportunity to make decisions. § 4502.1 Choices in your own life, including where and with whom you want to live, your relationships with people in the community, how you spend your time (including education, employment and leisure), the pursuit of your personal future, and the planning and implementation of a plan that fits your needs and desires. § 4502(a)-(j). The opportunity to make decisions and to have information you understand to help you make choices. § 4502.1

20 What are Regional Centers?
Non-profit corporate community agencies that provide services to people with developmental disabilities; There are 21 regional centers in California; and The main point of contact in your community between service management and the end-user. The Department of Developmental Services (DDS) contracts with regional centers to provide services to people with developmental disabilities. Regional centers are private, nonprofit corporations. There are 21 regional centers in California, each serving a specific geographic area. The regional center is the main point of contact in your community between the service provider and the family receiving the services. The regional center provides some services itself. It also helps get services from other agencies. § 4620. The regional center is required to develop an Individual Program Plan (IPP). The plan must list the services needed and the specific goals and objectives associated with those services. § 4646. Some kinds of services are so special that they can only be provided through the regional center. Regional centers do not directly provide most services and supports. They buy the services needed from private agencies or help get them from government agencies. The person directly responsible for actually helping to plan for and find the services and supports needed is a social worker, known as a service coordinator (sometimes called a "case manager"). § 4647.

21 Who is Eligible for Regional Center Services?
People with developmental disabilities; People who are at high risk of giving birth to a child with a developmental disability; and Infants who have a high risk of becoming developmentally disabled. The Lanterman act defines "high risk infant" to mean a child less than 36 months of age whose genetic, medical, or environmental history predicts a much greater risk for developmental disability than the risk of the general population. § 4642. The Lanterman Act defines a developmental disability as a disability that: originates before a person reaches age 18; continues or is expected to continue indefinitely; constitutes a substantial disability for that person; and is mental retardation, cerebral palsy, autism, or a seizure disorder; or is a disabling condition closely related to mental retardation or requiring treatment similar to that required for people with mental retardation. § 4512(a). Disabilities which are "solely physical in nature" are not included. § 4512(a). DDS regulations state that developmental disabilities do not include handicapping conditions that are "solely learning disabilities" or "solely psychiatric disorders." 17 CCR §  Consumer advocacy groups believe that denial of eligibility based on exclusion of handicapping conditions that are "solely learning disabilities" or "solely psychiatric disorders" may not be valid. Regulations must be consistent with statutes, and the Lanterman Act does not contain these two exclusions. Further, just because you may have a psychiatric condition or a learning disability does not mean that your disability is due solely to that condition. You can challenge a denial of eligibility by using the appeal process

22 What is a "substantial disability?”
A condition that is severe enough to be a major impairment of cognitive and/or social functioning. A condition that requires Interdisciplinary planning A condition that requires Coordination of Services Substantially disabling conditions require "interdisciplinary planning" and "coordination of services" to help you reach your maximum potential. If you need case management services, you may be substantially disabled. "Interdisciplinary planning" means that you need the services of people like teachers, psychiatrists, psychologists, medical doctors, social workers and rehabilitation counselors. "Coordination of Services" means that you use both specialized services and "generic" services that are available to the general public. In determining if there is a "substantial disability," an assessment should evaluate a wide range of skills. Assessment should cover communication skills, learning abilities, self-care, mobility, self-direction, independent living skills and economic self-sufficiency, at least. Many tests are available to assess abilities in these seven areas and in other day-to-day and long-term functions and abilities. 17 CCR § 54001.

23 What are the responsibilities of the regional center?
Search out and identify; Provide intake and assessment; Supply preventive services; and Develop an Individual Program Plan (IPP). Search out and identify people who may need regional center services. § 4641. Provide intake and assessment services to decide eligibility for regional center services. §§ 4642, 4643. Supply preventive services to potential parents who may be at high risk of parenting a child with developmental disabilities. § 4644. Develop an Individual Program Plan (IPP) that reflects each person's individual needs and choices, and ensure that the services and supports identified in the IPP are provided. §§ 4646(c), , 4648.

24 What Happens After Becoming Eligible?
Within 60 days after the intake and assessment a written Individual Program Plan (IPP) must be developed: It should focus on you and your family, where appropriate. It should promote community integration; an independent, productive, and normal life; and A stable and healthy environment. Within 60 days after the intake and assessment a written Individual Program Plan (IPP) must be developed. § 4646(c). This plan describes your needs, preferences and choices, your goals and objectives, and the services and supports you need to reach those goals. It should focus on you and your family, where appropriate. Your IPP should promote community integration; an independent, productive, and normal life; and a stable and healthy environment. § 4646(a).

25 Why is the IPP So Important?
It is a contract or agreement between the family of the consumer and the regional center; It establishes what will be provided and what will not be provided; It indicates who will provide the services; and Who will pay for the services The IPP is like a contract or agreement between the end-user and the regional center. It is an agreement to provide services and supports. If there is a service that is needed, it must be included in the IPP. Every service or support should be listed including any obtained from a "generic agency." If a service is in the IPP, the regional center must either provide it or help get it from another agency. If the regional center includes a service or support in your IPP but does not provide it or tries to end it or change it without your agreement, an end-user can file a complaint or an appeal.

26 How is the IPP Developed?
Gathering information and conducting assessments; and Assessments may be formal or informal The first step required of regional centers in the planning process is gathering information and conducting assessments to determine your life goals, capabilities and strengths, preferences, barriers to achieving your goals, and other concerns or problems. For children, a review of the strengths, preferences and needs of the family unit as a whole are included. Information must be taken from you, your family and friends, advocates, service providers and others so that a full picture is available. § 4646.5(a)(1). For many consumers no formal assessments are conducted. Instead, the information is gathered at the team meeting. This is why it's important to plan in advance of your team meeting, and to make sure that the first part of the meeting is spent reviewing this type of information and making notes on sheets that all team members can see and understand. For people who need and want certain kinds of services or supports, formal assessments will be done before the team meeting or between a first and second meeting. Examples of such services include behavior management services, discrete trial training, occupational therapy and supported living. Qualified people must do all assessments and they should happen in the natural environment when possible.

27 What Must the Regional Center do to Make the IPP Work?
Getting the services and supports; Providing advocacy; Identifying and building circles of support; Ensuring quality of services; and Developing new services The regional center has a number of duties to make your plan work. First is getting the services and supports identified in the IPP. Second is advocacy for legal, civil and service rights. §§ 4648(b), 4512(b). Third is identifying and building Circles of Support. § 4648(c). Fourth is ensuring the quality of the services. § 4648(d). Fifth is developing new programs. § 4648(e).

28 What are the Entitlement Services and Supports?
Assessment services Habilitation and training Treatment and therapy Preventive services An array of different living arrangements Community integration Employment/Day programs Habilitation means "becoming able." It is the process of becoming able to do everyday tasks, such as learning social skills, changing behavior, using the telephone, getting from one place to another using public transportation, and other skills for daily living. One responsibility of the regional center is to provide services to infants who are "at risk" in order to prevent them from becoming developmentally disabled, or at least to reduce the severity of their disability. The regional center also helps prospective parents who are at risk of having a child with developmental disabilities. The regional center can follow a child's development in the early years of life and help the parents get the services the child needs to prevent a developmental disability, including specialized medical services. The regional center can also help the prospective parents get services, such as prenatal and perinatal care, that might help prevent developmental disabilities. § 4644. The regional center must help to participate fully in community and civic life including in programs, services, work opportunities and activities available to people without disabilities. § 4648(a)(13). The regional center has general responsibilities to improve integration into the community through such activities as: Providing outreach and training for local agencies, businesses and programs on how to include people with disabilities in community activities; Developing community resource lists; Helping service coordinators and family members expand community integration options; and Developing and facilitating natural support systems. §§ 4648(a)(13), 4688.

29 Entitlement Services and Supports (Continued)
Family support services Relationship services and supports Emergency and crisis intervention services Specialized equipment Transportation services Facilitation/Self-Advocacy Interpreter/translator services Advocacy

30 The History of Special Needs Children
Prior 1975, approximately 1 million children with disabilities were shut out of schools Hundreds of thousands more were denied appropriate services Ninety percent of children with developmental disabilities were housed in state institutions.

31 Current Status of Special Needs Children
Three times the number of young people with disabilities are enrolled in colleges or universities as compared to prior to 1975, and Twice as many of today's 20 year olds with disabilities are working.

32 The Unfulfilled Promises to Special Needs Children
Twice as many children with disabilities drop out of school. Drop outs do not return to school, have difficulty finding jobs and often end up in the criminal justice system. Girls who drop out often become young  unwed mothers—at a much higher rate than their non-disabled peers. Many children with disabilities are excluded from the curriculum and assessments   Twice as many children with disabilities drop out of school.   Drop outs do not return to school, have difficulty finding jobs and often end up in the criminal justice system.   Girls who drop out often become young  unwed mothers—at a much higher rate than their non-disabled peers.   Many children with disabilities are excluded from the curriculum and assessments used with their non-disabled classmates,  limiting their possibilities of performing to higher standards of performance.

33 PL94-142 Education for All Handicapped Children (1975)
Assures that all handicapped children have available to them a free appropriate public education (FAPE) regardless of how, or how seriously, he may be handicapped Mandates an individualized education program (IEP) for every student with a disability emphasizes special education and related services designed to meet their unique needs, Assures that the rights of handicapped children and their parents or guardians are protected, Assist States and localities to provide for the education of all handicapped children and Assess and assures the effectiveness of efforts to educate handicapped children. The term 'free appropriate public education' means special education and related services which (A) have been provided at public expense, under public supervision and direction, and without charge, (B) meet the standards of the State educational agency, (C) include an appropriate preschool, elementary, or secondary school education in the State involved, and (D) are provided in conformity with the individualized education program required under section (19) The term 'individualized education program' means a written statement for each handicapped child developed in any meeting by a representative of the local educational agency or an intermediate educational unit who shall be qualified to provide, or supervise the provision of, specially designed instruction to meet the unique needs of handicapped children, the teacher, the parents or guardian 0= such child, and, whenever appropriate, such child, which statement shall include a statement of the present levels of educational performance of such child, a statement of annual goals, including short-term instructional objectives, a statement of the specific educational services to be provided to such child, and the extent to which such child will be able to participate in regular educational programs the projected date for initiation and anticipated duration of such services, and appropriate objective criteria and evaluation procedures and schedules for determining, on at least an annual basis, whether instructional objectives are being achieved.

34 PL 98-199 Education of the Handicapped Act Amendments (1983)
Allows for federal funding to create parent training and information centers (PIC) Expands services for children from birth to age 3 and the initiatives for transition services from school to adult living for students with disabilities Allows for federal funding to create parent training and information centers (PIC) so that parents could learn how to protect the rights that PL guarantees their child. Provides financial incentives to expand services for children from birth to age 3 and the initiatives for transition services from school to adult living for students with disabilities

35 PL 99-372 Handicapped Children's Protection Act (1986)
Allows parents or guardians to be reimbursed for reasonable legal costs if they WIN a hearing or court action. Requires that the case and the costs of the legal proceedings should be discussed with the lawyer prior to any legal action

36 What IDEA Attempted To Do
Raise expectations for children with disabilities; Increase parental involvement in the education of their children; Ensure that regular education teachers are involved; Include children with disabilities; Support quality professional development. Ensure that regular education teachers are involved in planning and assessing children's progress Include children with disabilities in assessments, performance goals, and reports to the public Support quality professional development for all personnel who are involved in educating children with disabilities

37 IDEA Accomplishments Full-inclusion has become the standard
Increased graduation rates Increased employment Greater college and University attendance More support programs for education Improved technology for all of us Over 1 million children, many of whom would have been placed in separate schools and institutions 25 years ago, are being educated in neighborhood schools, saving an average of $10,000 per child per year.   Nine percent more children with disabilities graduated from high school  between 1984 and   Youth served under IDEA are employed twice as often as their predecessors, older American with similar disabilities who were not served under the law.   Nearly half of all adults with disabilities have successfully completed course-work in colleges and universities.   Although less than 1% of the annual expenditures to educate children with disabilities is spent on research and development to improve practice, these dollars have had exponential results.  They support programs that allow children with disabilities to become independent learners and self-supporting adults.   New knowledge has resulted in technologies that have enriched all our lives.  For example, the Kurtzweil Machine, originally developed for taking written text and translating it into Braille and speech was the forerunner of the fax machine.  Captioning, an aid for the deaf, has become a boon for older Americans with poor hearing and for those who are learning to read and speak English.

38 IDEA’s Areas of Weakness
Eligibility and over representation of racial and ethnic minorities; Funding of IDEA; Monitoring and enforcement; and Discipline The National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress on issues affecting 54 million Americans with disabilities. NCD is composed of 15 members appointed by the President and confirmed by the U.S. Senate. NCD's overall purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society. In keeping with that mission, on February 11, 2002, NCD published a working document on the reauthorization of the Individuals with Disabilities Education Act. The paper, IDEA Reauthorization: A Working Paper, identified four areas that NCD determined to be particularly critical to the implementation of IDEA: eligibility and over representation of racial and ethnic minorities; funding of IDEA; monitoring and enforcement; and discipline.

39 Overrepresentation of Minorities Under IDEA
Prevent special education placement Intervene in general education Increase regular educational staffing Improve family centered services Improved school support services Increased funding for regular education Recommended solutions to overrepresentation tended to cluster around a number of themes, the most prevalent being the need for strong early intervention programs for identification and prevention of special education placement. Likewise, interventions in general education, with proper testing, rigorous eligibility criteria, assessments, materials, and high quality instruction. For successful early intervention and general education prevention the shortage of teaching staff is identified as a major issue and targeted for changes through professional development, parent training and support. Witnesses identified a number of family centered services as important to overcome overrepresentation: strong prenatal and other health care services, coordinated family services; and, culturally appropriate technical assistance to schools. There was a strong emphasis on the need for improved school services: training, especially increased training in behavior management; culturally sensitive training for both special and general education teachers; pre-service and in-service training; training in culturally sensitive diagnostics and parent training; and a National Advisory Panel to develop partnerships between universities and the community to strengthen in-service training. Especially important to note is the statement about the importance of strong personnel preparation programs for university trainers due to a serious shortage of special education expertise at the university level. And finally, increased funding is important to secure the recommended services. Quality research. It is similarly important to remove financial incentives for higher numbers of special education placements. The importance of data is a constant theme throughout and it certainly was highlighted here as an important issue.

40 Monitoring and enforcement
Significant weaknesses exist in the current systems of monitoring and enforcement More timely system focused on solid outcomes for students More classroom time for teachers There is clear agreement that significant weaknesses are present in the current systems of monitoring and enforcement. A large number of comments addressed the need for change to a less bulky, more timely system focused on solid outcomes for students and more classroom time for teachers. It is important to note that there were no calls to eliminate federal monitoring, rather to improve it. Three themes for solutions emerge in public opinion: Professionals say there is too much needless paperwork leaving too little teaching time. This claim is not supported by parents who believe process is important for implementation; The question of responsibility for the paperwork requirements--federal or state bureaucracy--gives rise to the suggestion that clearer and more concise instructions are needed for States to assist them in limiting paperwork to essential information; and More emphasis should be placed on meaningful monitoring activities leading to improvements in student outcomes. These issues frame a lively public debate over how much paperwork, monitoring, and/or enforcement is necessary for implementation of the IDEA and what level should be responsible for them. The new Departmental initiative for monitoring--Continuous Improvement Monitoring--has been well received. The next "generation" of improvements is the still evolving Focused Monitoring, which is designed to collect data focused on specific identified problems and solutions. Inhibitors in the current system were identified as: insufficient enforcement; too much paperwork; too much bureaucracy; inconsistency in federal follow-through and slow turnaround time; long term patterns of noncompliance; too much procedure/not enough substance at the state and federal level; big sweep--no targets to identify and fix the real problems. All stakeholders, including parents, should be included in the monitoring system. A lingering question about the paperwork requirements begs for an answer: "Is the origin of too much paperwork federal requirements or state regulations?" There was a strong cry for simplicity and consistency across states in data collection and the IEP process, with many recommendations for standardized data collection and IEP formats. The IEP must be a tool for instruction and assessment rather than paper chase, and data must be useful to states for improvement. Systems of accountability must include assessment and unified reporting for all students, including students with disabilities. Alternate assessments and individualized accommodations must be available for students who need them.

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