By Cheryl Temple

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Adequate Yearly Progress and One Percent of
Students with Severe Cognitive Disabilities

• By Cheryl Temple
• Summer 2004
• EDUC 872

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How Was One Percent Decided?
Let the Journey Begin!!!!!!!
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Definition of severe cognitive disability

• States can define for themselves whom to count
  as students with the most significant cognitive
  disabilities
• Initial proposal by the Dept. of Education was
  students whose intellectual functioning and
  adaptive behavior are three or more standard
  deviations below the mean.
• From National School Boards Association
  December, 2003
• http//www.nsba.org/site/doc_cosa.asp?TrackIDSID
  1DID32690CID164VID50

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Number of population designated as severely
disabled
States may use alternate achievement standards
for students with the most significant cognitive
disabilities to calculate adequate yearly
progress (AYP). The percentage of those students
at the district and state level who are
considered proficient using assessments aligned
to alternative standards may not exceed one
percent of all students assessed.
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AYP Requirements

• Federal regulations give school districts and
  states the option of counting the proficient
  alternate assessment scores of up to 1 percent of
  students with the most severe cognitive
  disabilities.

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What is Alternate Assessment?

• Data collection procedures used in place of the
  typical assessment when students cannot take
  standard forms of assessment.
• Determined by IEP team
• Must relate to general curriculum
• Alternate assessments must yield results in at
  least reading/language arts and mathematics by
  the 2005-2006 school year, and, beginning in the
  2007-2008 school year, science.

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States Seeking Exceptions from Education USA,
May 2004

• Extraordinarily rural nature
• Requested permanent exception
• 369 out of 439 districts have enrollment of less
  than 100 students

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States Seeking Exceptions from Education USA,
May 2004

• Proposed a 7 percent cap for 2004-2005 school
  year
• Need more time to align their state testing
  policy with the federal law
• 9 percent of students take the states alternate
  assessment in reading and 8 percent in math

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States Seeking Exceptions from Education USA,
May 2004

• Wants more time to examine existing testing
  system
• Still trying to define which students have the
  most significant disabilities
• Seeking a 1.5 percent cap

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States Seeking Exceptions from Education USA,
May 2004

• Seeking a 3.5 percent cap for three years based
  on the number of students eligible to take the
  states alternate assessments
• Includes gap kids who cannot take grade-level
  assessments but are not eligible for alternate
  assessments

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VIRGINIA LEGISLATIVE ISSUE BRIEF Number
34                  September 2003

• Virginia has agreed to two NCLB mandates in this
  area under protest. First, the Commonwealth
  protested the requirement, beginning in 200203,
  to limit to one percent the number of scores from
  alternate assessments for students with severe
  cognitive disabilities that can be considered
  proficient for purposes of AYP calculation.

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Agency Documents Clarify Spec. Ed. Assessment
Leeway
Olson, L. (2003). Education Week, 28, 20-24.
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How Did it Start?

• In a notice of proposed rulemaking last summer,
  the department had proposed limiting the percent
  of special-needs students who could be held to
  other than a grade-level standard to 0.5 percent
  of the total student population.

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How Did it Start?

• People expressed concern that the figure was too
  low.
• Worried that small rural districts could easily
  exceed that limit if they had even a few students
  with severe cognitive disabilities.

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How Did it Start?

• Others argued that the provision would be unfair
  to districts with large populations of students
  with disabilities
• Also unfair to schools with programs
  specifically designed to serve such students.

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How Did it Start?

• Of the 38 states that provided such data to the
  federal government in 2000-01, 21 had 5 percent
  or fewer of students with disabilities who
  participated in state testing take alternative
  assessments, or about 0.5 percent of all
  students.
• But 14 other states had between 5 percent and 10
  percent of students with disabilities who took
  such tests.

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Limitations

• Didnt have a reference list
• Didnt state where she got her facts from

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So..I emailed her
Question Lynn,   I am a Ph.D. student at George
Mason University and am taking a Policy class
this summer.  I am researching how the decision
was made regarding the one percent rule for
students with severe cognitive disabilities and
AYP.  I came across your article from Education
Week on LDOnline and wanted to ask you a
question.  I see that you make reference to a
proposed rule of limiting the percent to .5 and
then it was changed as people expressed concern
that the figure was too low.  Can you tell me
where you got that information?  Thats what Im
trying to find out what the percent was based
on and who made the decision.  I see that the
states provided the data to the federal
government but where would I find that
document?   I would really appreciate any help
that you can give me.   Thanks, Cheryl
Temple Educational Specialist Integrated
Technology Services Fairfax County Public
Schools 703-204-3963
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And the answer was..
Answer When the federal government puts
out a notice of proposed rulemaking, it's open
for public comment, including comments from
states. Those comments are all on file at the
Education Department and you can make a request
to come in and read them.Lynn
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2003 State Special Education Outcomes Marching
On Published by the National Center on
Educational Outcomes

• Thompson, S., Thurlow, M. (2003). 2003 State
  special education outcomes Marching on.
  Minneapolis, MN University of Minnesota,
  National Center on Educational Outcomes.
  Retrieved July 14, 2004, from the World Wide
  Web http//education.umn.edu/NCEO/OnlinePubs/2003
  StateReport.htm./

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Alternate Assessment
Table 4. Alternate Assessment Approaches 2000-2003
 Year Portfolio/body of evidence  Rating Scale/Checklist  IEP analysis  Other  In development/ revision
Regular States Regular States Regular States Regular States Regular States Regular States
2000 28 (56) 4 (8) 5 (10) 6 (12) 7 (14)
2001 24 (48) 9 (18) 3 (6) 12 (24) 2 (4)
2003 23 (46) 15 (30) 4 (8) 5 (10) 3 (6)
Unique States Unique States Unique States Unique States Unique States Unique States
2003 4 (44) 0 1 (11) 1 (11) 3 (33)

• In 2003, most of the regular states used a
  portfolio or body of evidence approach
• Still, the number of states using a portfolio or
  body of evidence approach decreased from 28
  states in 2000 to 24 states in 2001 to 23 states
  in 2003 (see Table 4).
• The number of states using a rating scale or
  checklist increased from 4 states to 15 states
  during the same time frame.
• Three of the regular states were revising their
  alternate assessment system in 2003.

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Im on the trail
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Federal Register March 20, 2003
We invite you to submit comments regarding these
proposed regulations. We are specifically
interested in your comments on the following (1)
Whether, in proposed Sec. 200.13(c)(1), existing
scientific research, State/LEA or national data,
and the current state of knowledge support
setting the cap at 1.0 percent for students with
the most significant cognitive disabilities whose
achievement can be measured against alternate
achievement standards for determining adequate
yearly progress (AYP) at the LEA and State
levels.
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Federal Register March 20, 2003
(2) What, if any, significant implementation
issues pertaining to the definition of students
with the most significant cognitive
disabilities'' in proposed Sec. 200.1(d)(2) would
arise at the State, LEA, and school levels.
Specifically, the Department requests comments on
what current recordkeeping and reporting
requirements would States and LEAs use to comply
with this provision and whether additional
information or data will be necessary for
compliance.
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Federal Register March 20, 2003
Nationally, 1.0 percent of students in the
grades assessed represents approximately nine
percent of students with disabilities, but the
actual percent varies across States.
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Federal Register March 20, 2003 The
Answer!!!!!!!!!!!!

• The original mandate was that only.5 percent of
  total population could count towards AYP.
• It was because of public comment that it
  changed to 1.0 percent
• The .5 percent of total population figure was
  derived based on converging scientific evidence
  from multiple sources.

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Federal Register March 20, 2003

• Even though the .5 percent was based on the
  best available data, those data are limited. We
  are persuaded by the comments of a number of
  stakeholders who said that 0.5 percent did not
  reflect their experience rather, a one percent
  limitation would allow for normal State and LEA
  variations in the occurrence of students with the
  most significant cognitive disabilities. p. 13799

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Metropolitan Atlanta Developmental Disabilities
Surveillance Program (MADDSP) sponsored by the
Centers for Disease Control (CDC)
Boyle, C., Holmgreen, N., Schednel, D. (1996).
Prevalence of Selected Developmental Disabilities
in Children 3-10 Years of Age The Metropolitan
Atlanta Developmental Disabilies Surveillance
Program, 1991, MMWR Surveillance Summaries, 1996).
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Summary

• The Metropolitan Atlanta Developmental
  Disabilities Surveillance Program (MADDSP)
  monitors the prevalence of four serious
  developmental disabilities
• Mental Retardation
• Cerebral Palsy
• Vision Impairment
• Hearing Impairment

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Methods

• Children are identified through
• Special education programs at nine public school
  systems serving the area being studied
• Enrolled in state schools
• Georgia Dept. of Human Resource facilities
• Two metropolitan-Atlanta area pediatric care
  hospitals, one public hospital, and clinics
  associated with these facilities

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Methods

• Source records are reviewed annually
• Because these are lifelong conditions, once a
  child is identified they are always included as
  long as they meet age and residence requirements
• Childs record is re-examined on the basis of a
  time schedule to verify and update the childs
  diagnostic information

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Sample

• Children 3 10 years of age
• 3 years is the beginning of age span covered by
  IDEA and 10 years is the age by which most
  children should have entered special education
  program
• Live in five county metropolitan-Atlanta area
• Children who have at least one of the four
  developmental disabilities are reviewed annually
  through records at schools, hospitals, and other
  sources

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Reporting Period

• January 1991 December 1991
• (old data for 2003)

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Instrument

• Records obtained from the sources listed in
  Methods
• 1990 U.S. Census data were used to calculate
  point-prevalence rates for 1991 children 2 9
  years of age (who were 3 10 years of age in
  1991) in the five-county metropolitan-Atlanta
  area.

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Results

• During 1991, rates for mental retardation varied
  by age, race, and sex rates ranged from 5.2 per
  1,000 children (.5 percent) to 16.6 per 1,000
  children
• Severe mental retardation (IQ below 50)
  accounted for 1/3 of all cases.
• The rates were not adjusted for possible
  confounding factors (maternal education, family
  income, etc.)

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Results

• Overall prevalence of mental retardation was 8.7
  per 1,000 children 3-10 years of age
• 2/3 were mild severity (IQ 50 or above)
• Prevalence varied with age increasing from 5.2
  per 1,000 children ages 3-4 to 12.3 per 1,000
  children ages 9-10.
• Increase in prevalence for mild and moderate but
  not severe or profound
• Rates of mental retardation for black males were
  3.1 times higher than white females, 2.4 times
  higher than white males, and 1.7 times higher
  than black females

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Discussion

• According to the authors, the race-related
  differences suggest that aspects of the
  socioeconomic environment that negatively
  influence the cognitive ability of children need
  to be addressed.
• Slightly elevated rates of mental retardation
  among boys may related to sex-linked genetic
  disorders and more frequent referral and testing
  of boys due to behavioral problems.
• Etiology of most cases are undetermined
• MADDSP is trying to identify risk factors to
  reduce the prevalence

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Conclusion

• The findings are consistent with findings from
  previous studies
• Rates concur with previous CDC study

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Limitations

• Old data
• Some records do not contain the information
  necessary to determine a childs eligibility, so
  they dont get counted
• Some eligible children may have been excluded
  because they had not been identified yet
• Biases may increase the likelihood of
  identifying children who have certain demographic
  or socioeconomic characteristics.

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Limitations

• Demographic patterns described in this report
  may reflect social or other characteristics
  unique to the study population. Therefore,
  hard to generalize this study to make decisions
  for students across the U.S.

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The prevalence of mental retardation a critical
review of recent literature
Roeleveld, N., Zielhuis GA., Gabreels, F. (1997).
Developmental Medical Child Neurology, 29, 125-32.
46
Summary

• The purpose of this review was to establish
  valid estimates of the true prevalence rates for
  SMR and MMR in children of school age .
• The methodology of prevalence studies performed
  since 1960 was critically evaluated
• Distinction was made between ascertained and
  true prevalence estimates.

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Method

• A computerized literature search was conducted
  on MED-LINE regarding publications from 1981 to
  1995, using the keywords MR and occurrence.
• Most papers were traced through references
  listed in reviews
• The average SMR prevalence rate was calculated
  by using the inverse variance of the rates as a
  weighting factor

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Sample

• Study was restricted to institutionalized cases
• Excluded if population size was not given
• Excluded if age group exceeded 5 19 and no age
  structure was specified
• Excluded if the IQ levels studied were not
  specified
• Excluded if MR could not be distinguished from
  other disabilities
• 43 original articles were included

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Sample

• MMR IQ 50 70
• SMR IQ less than 50

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Results

• Prevalence rate for SMR in children of school
  averages 3.8 per 1,000 (.4 percent).
• Increasing prevalence up to the age of 15
  indicating that SMR is not fully assessed in the
  first few years of life.
• Male to female ratio is remarkably constant
• Only a few studies had higher rates in rural
  compared to urban

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Conclusions

• Revealed an enormous gap in knowledge about MR
• Varied estimates of prevalence rates are scarce
• Need for standardization of definitions and
  research methods
• Approx. 3 percent of school age children are
  mentally retarded and a considerable proportion
  could have been prevented.
• Possibilities for the prevention of SMR are
  marginal

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Limitations

• Revealed an enormous gap in knowledge about MR
• Varied estimates of prevalence rates are scarce
• Need for standardization of definitions and
  research methods
• For developing countries, showed prevalence rate
  of between 5 and 16 per 1,000 but changed the
  definition of SMR to IQ 55 or less.

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Mental Retardation
Beirne-Smith, M., Patton,J., Ittenbach,
R.(2001). Mental Retardation, 6th edition. Upper
Saddle River Prentice-Hall Career and
Technnology.
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Summary

• The section on Incidence and Prevalence
  discusses the difference between the two words
• Incidence refers to the number of new cases
  identified within a population over a period of
  time
• Prevalence refers to the total number of cases
  of some condition existing within a population at
  a particular place or a particular time. Not as
  useful in determining causal relationships but
  does help determine need for services.

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Summary

• Prevalence rates are represented as percentages
• Prevalence is identified in two ways
• Identifiable prevalence cases that have come
  in contact with some system
• True prevalence assumes that several people
  who may meet the definitional criteria exist
  unrecognized by our system

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Factors Associated with Prevalence Rates

• Definitional Perspective
• Gender
• Community Variables
• Sociopolitical Factors

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Definitional Perspective

• If IQ were the only criterion for defining
  mental retardation, approximately 2.3 percent of
  the population could be considered mentally
  retarded.
• Most contemporary definitional perspectives of
  mental retardation suggest a prevalence figure
  that is below 1.

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Definitional Perspective

• If IQ were the only criterion for defining
  mental retardation, approximately 2.3 percent of
  the population could be considered mentally
  retarded.
• Most contemporary definitional perspectives of
  mental retardation suggest a prevalence figure
  that is below 1.

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Gender

• More males than females are identified as
  mentally retarded at all age levels.
• Biological deficits associated with the X
  chromosome
• Different child-rearing practices and different
  social demands (based on what study?)
• Societys demands for self-sufficiency is higher
  for males than females (Robinson Robinson,
  1976).

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Community Variables

• More likely to be identified as mentally
  retarded in urban communities than rural
  (MacMillan, 1982)
• Have better developed referral and diagnostic
  systems
• As the severity of mental retardation increases,
  socioeconomic and cultural factors are less
  pronounced.

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Sociopolitical Factors

• Fewer students are identified since the federal
  mandate was implemented in the mid-1970s
• AAMR wants to change the definition so it
  doesnt include IQ but rather the adaptations
  that are needed.

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Conclusion

• Prevalence figures in mental retardation have
  proven to be difficult to establish.
• Three percent used to be cited by the government
• Most professionals suggest prevalence rates of
  less that one percent.

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Conclusion
Of the 1 to 3 of the total population who have
mental retardation, only 15 need extensive
support - 10 moderate, 3 severe, 2 profound
Taken from American Psychiatric Association,
1994. Diagnostic and statistical manual of
mental disorders (4th ed.). Washington, D.C.
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Limitations

• According to the March 20, 2003, Federal
  Register, Another study indicates that students
  with severe to profound mental retardation are
  estimated at somewhat less than .13 percent of
  the total population. However, the page number
  of this quote is not given and so difficult to
  find in the book. I was never able to find this
  specific study.

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Implications for Policy Change

• Need to define mental retardation so that the
  definition used is consistent
• Need to measure using the same terminology.
  Incidence (number of new cases) and prevalence
  (number of existing cases) refer to different
  types of statistical concepts and should not be
  used interchangeably

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Implications for Policy Change

• Need to consider those students who are
  functioning below grade level and are unable to
  complete standardized tests.
• For example, if Severe cognitive disability
  refers to students with an IQ of 50 or below,
  then students like my daughter would be
  ineligible for alternate assessments. However,
  she is unable to read or write so how could she
  possibly take a standardized SOL type of test?

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Implications for Policy Change

• There is an unintended consequence of switching
  the focus of assessment from work-based and
  alternative forms of assessment to more
  traditional forms of evaluation and testing.

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Is there sufficient evidence to reach consensus
on this matter?

• No, there is not sufficient evidence. Since the
  definition of severe cognitive disability
  varies, there is no way to determine the actual
  number of students.
• The three studies used to base this decision on
  were all limited.

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What evidence is missing and what research might
be done to fill the gaps?

• The missing evidence is the actual number of
  students with severe cognitive disabilities,
  partially because this term has not been defined.
  
• Research is needed to determine how many
  students function at a level that makes it
  unfeasible for them to take a paper and pencil
  standardized test.

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Digest of Education Statistics 199866 ELEMENTARY
AND SECONDARY PROGRAMS FOR THE DISABLED Table
53.Children 0 to 21 years old served in
federally supported programs for the disabled, by
type of disabilityhttp//nces.ed.gov/programs/dig
est/d98/pdfs/table053.pdf - 14.2KB Number
served as a percent of total enrollment 1996-97
Mental Retardation (all) 1.27
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Maybe theres more to adequate yearly progress
for students with severe cognitive disabilities
than a test score!