This document provides an overview of the history and development of advocacy for individuals with disabilities and their families in the United States. It discusses key events and legislation that helped establish rights and services for this population, such as institutional abuse scandals in the 1960s/70s, the normalization and social role valorization movements, and seminal court cases like PARC and Mills that established the right to public education. It also summarizes the passage and reauthorizations of the Individuals with Disabilities Education Act, which aims to provide students with disabilities a free and appropriate public education. The document serves to inform trainees in the Volunteer Advocacy Project about the importance of advocacy and the legal foundations that protect the rights of those with disabilities.
2. Volunteer Advocacy Project (VAP)
•Basics of the Training
•11-week Training
•Saturdays 8:30am to 11:30 am
•Over the following dates:
– Sept 10th to Dec 3rd
3. Structure ofTraining Sessions
• Each training session will have 2-5 topics
• At least 2 - 15 min breaks will occur
We are building community: please feel free to bring snacks to share
Starting a FB private group for group feedback
• 1-3 Expert speakers will attend sessions
• Sessions will be a mix of lecture and hands-on, interactive activities
4. Training Norms
•Be on time
•Participate
•Use your experiences but be ready to learn with
an open mind
•Respects others’ backgrounds and experiences
5. In addition to the trainings…
•Complete any outside assignments (ie: reading/
case studies) for the sessions
•Participate at the weekly sessions
•Take a pre- and post-test
•Complete a brief online presenter evaluation after
each session
•Serve 4 families after training is completed
6. If you have to miss a session…
•Let us know in advance.
•Watch session online and participate in real time (we
will send you a link if you let us know ahead of time).
•Watch via privateYouTube channel and complete
competency quiz before the next week.
7. Post-Graduation
• Voluntarily advocate for four families
• Advocacy can mean a variety of things: letter-writing, meetings, etc.-
Family matching services will be facilitated
• Participate in listservs, advocacy networks, support groups, etc.
• Keep your contact information up to date for family matching
matching services
• Ongoing support from this project
• Stay in touch with otherVAP grads!
8. Introductions
•Who are we?
•Who are you?
•Tell us about your family.
•What prompted your interest in this training?
•What do you hope to get out of the training?
9. What is advocacy?…
Group activity:
What pieces of legislation exist for persons with
disabilities and their families?
•Why do these policies exist?
•Who do they support?
•What areas are they in?
10. Do these policies work?
What are the common implementation
problems in disability laws?
– Education
– Housing
– Employment
– Health
11. Common Implementation Problems in
Disability Law
• Lacking funding
•Waiting lists
• Different eligibility schemes
• Lag time in proving eligibility
• Constantly evolving policies
• Difficult to navigate systems
12. Advocacy in Special Education:
An advocate is someone who acts on behalf
of or for another person’s cause.
(Alper, et al., 1995)
14. Advocacy Takes Many Forms
Advocacy can be formal and informal
Do you have any examples of informal
and formal advocacy?
15. Informal Advocacy – Person-First
Language
Conversations
Saying “Individual with Down syndrome” versus “Down syndrome person”
Saying “Intellectual disability” instead of “mental retardation”
Not saying the “R” word
Saying “student with a disability” instead of “disabled students
Modeling and teaching people first language
Learning your rights as an advocate or self-advocate
Networking
16. Formal Advocacy
Letter writing
Hiring an advocate or attorney (representation)
Affecting legislation
Getting publicity or media coverage
Utilizing procedural safeguards
17. CommonWays to Advocate
in Special Education
• Understanding the child’s disability
• Knowing your rights
• Knowing how to get resources and information
• Knowing how to ask for help
• Documenting conversations
• Being motivated to learn this knowledge
• Applying learned skills
• Becoming more assertive
• Gaining self-confidence to advocate
(Wang, et al., 2004)
18. Why is it so hard for
parents to advocate for
their child?
19. • Historically, parents have been viewed as peripheral to
education (Stoner, et al., 2005)
• IDEA does not provide clear instruction
• Educators’ lack understanding of child’s needs (Hess, et al.,
2000)
• Significant power differential between school and parent
(Leiter & Krauss, 2004)
• Parents afraid to jeopardize relationships (Engel, 1991)
• Poorly scheduled IEP meetings (Linan-Thompson & Jean, 1997)
• High reading level materials (Harry, 1992b; Leung, 1996; Linan-
Thompson & Jean, 1997)
20. And the list goes on…
• Lack of transportation or childcare (Kaly & Rao, 1991)
• Communication and language barriers (Heller, Markwardt,
Rowitz & Farber 1994; Hyun & Fowler, 1995; Leung, 1996)
• History of poor relationships with schools (Salend &Taylor,
1993;Thorp, 1997)
• Cultural differences in help-seeking behavior(Danseco, 1997),
and beliefs about disability (Danseco, 1997; Huang, 1993)
• Perceptions about professionals as experts whose opinions
cannot be opposed (Harry, Allen & Mclaughlin, 1995)
21. And on…
•Who has the time?
•Who has the money?
•Who can emotionally distance themselves from
their child?
(Cunconaan-Lahr & Brotherson, 1996)
22. How can we support parents in
ensuring their children receive
appropriate educational
services?
We can provide them with
effective and knowledgeable
special education advocates.
23. History of theVAP
Started in 2008 by Meghan Burke
Established to fill the void of special education advocates in Nashville
Over 300 trainees since then
Cohort of 11 in 2008, grew to cohort of 42 in 2011
2008: 1 site in Nashville, 2011: 6 sites across the state
Trainees from more than 33 counties
Brought to KY for first time 2016 by Build Inclusion in partnership with
HDI
24. ThisTraining Has Five Goals:
1.To provide instrumental support
2.To provide affective support
3.To help at least four families per trainee
4.To grow and improve our model
5.To research advocacy trainings
25. Why is advocacy needed for families of
children with disabilities?
• Human rights violations & victimization of
persons with disabilities
• History of institutions and of lack of services
• Legal pronouncements not always followed in
practice
26. A Quick History
• Generally, from exclusion to inclusion
• Outgrowth of movements in 1960s early 1970s
• Kennedy Administration
• Institutional abuses
• Philosophy of normalization
27. Pre-1950s
•Institutionalization of persons with disabilities
–Turning point = civil rights era (Brown v. Board of Ed)
– First legislation for persons with disabilities = 1956
amendments to Social Security
•included persons with disabilities over age 50
28. Pre-1975: Education and Children with
Disabilities
• Prior to 1975
– No federal special education law
– 1,000,000 children with disabilities were excluded
from schools
– Many state laws allowed schools to prohibit
children with disabilities from attending
–Why did things change??
30. Eunice Kennedy Shriver
•Founder of SpecialOlympics
•Pushed JFK to “do something” about intellectual
disabilities
•Went public with…
31. Saturday Evening
Post Article
Sept. 22, 1962
Discussed:
– family’s situation
– Joseph P. Kennedy, Jr. Foundation
– Efforts-advances
– Focus on Hope
– Major “coming out” for disabilities
in US
32. From Saturday Evening Post article,
Sept. 1962
“Like diabetes, deafness, polio or other
misfortune, mental retardation can happen in
any family. It has happened in the families of
the poor and of the rich, of governors,
senators, Nobel prize winners, doctors,
lawyers, writers, men of genius, presidents of
corporations—the President of the United
States…”
33. Resulting in…
• In 1961, President John F. Kennedy established the President's
Panel on Mental Retardation, which resulted in the
involvement of the executive and legislative branches in
setting policies and establishing new programs.
• President’s Committee on
Mental Retardation (PCMR) 1966-1986
• Founding of the Research &
Service Infrastructure of ID
– More later…
34. 2) Abuses at Institutions
•Began coming to light in late 1960s
- Christmas in Purgatory
- All shocked country
- Seemed so at odds with Johnson’s idea of
the Great Society, war on poverty, Head Start
program, etc.
35. Christmas In Purgatory, Burton Blatt and Fred
Kaplan (1965)
This is a classic photo essay of legally
sanctioned human abuse in state institutions
was written and photographed.
We saw children with hands tied
and legs bound.
36. In one such dormitory, with an overwhelming odor, we
noticed feces on the wooden ceilings, and on the
patients as well as the floors.
The infant dormitories depressed us the most. Here,
cribs were placed -- as in the other dormitories -- side by
side and head to head.
37. Christmas In Purgatory: A Photographic Essay On Mental
Retardation
There is a hell on earth, and in America there is a special inferno.
We were visitors there during Christmas, 1965....
38. Bengt Nirje: Normalization
• Normal rhythm to”:
• Day
– up in AM, bed at night
• Week
– workweek & week-ends
• Year
– holidays, vacations
• And
– choice, self-determination,
– Sexual, economic, environmental patterns of community
39. WolfWolfensberger
(1934-2011)
Social Role
Valorization
•Persons with disabilities should
have the opportunity to live their
lives as independently as
possible, making their own
decisions regarding work
•Dignity of risk
•Use of person-first language
•Use of non-stigmatizing
language
Normalization: From
lifestyle – service delivery
– Do special classes, schools,
institutions promote normalization?
– How “normal” are all
environments for persons with
disabilities?
https://youtu.be/H6T3tXV3eX4
40. Together, these led to…
•Civil rights legislation for persons with disabilities and
their families
•Special Ed laws (PL 94-142; IDEA)
•Rest ofVAP (so I will not elaborate…)
•And “Disability Infrastructure”
41. U.S. Disability Infrastructure:
Service &Training
• University Centers of Excellence in Developmental
Disabilities (UCEDD)
• Service-outreach (& technical assistance)
• Training
• Research (more applied than IDDRC’s)
• Dissemination
• LEND (=Training programs)
• Human Development Institute at the University of KY
• www.hdi.uky.edu
42. Via theWeb
• www.aucd.org; see the following:
• Listing of EKS-IDDRC’s, UCEDDs, &
• LEND programs
• National Information Reporting System (NIRS)
• Can find out “who’s doing what” by
» IDDRC, UCEDD, or LEND
» By topical area
• Blog from Andy Imparato – Celebrating 50th anniversary of ADA
43. Brown v. Board of Education (1954)
• Civil Rights Movement
• Called for desegregation of schools
• No ‘Separate but equal’
“We conclude that in the field of public education the doctrine of ‘separate but
equal’ has no place. Separate educational facilities are inherently unequal…”
“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, where the state has undertaken to provide it, is a right that must
be available to all on equal terms.” – Chief Justice EarlWarren
44. Pennsylvania Association for Retarded
Children (PARC) v. Pennsylvania, 1971
• PARC (parent advocacy group) led the charge to change PA law that denied
services to
children who had not reached a “mental age of five years” by the start of 1st grade
• PARC v. Pennsylvania was the catalyst for education reform, especially the term
Free Appropriate Public Education (FAPE): “to provide…to every retarded person
between the ages of six and twenty-one years…access to a free public program of
education and training appropriate to his learning capacities”
• Least restrictive environment possible (LRE) and IEP
“Placement in a regular school is preferable to placement in a special school class is
preferable to placement in any other type of program of education and training.”
45. Mills v.The Board of Education of the District
of Columbia, 1972
• Students with disabilities were expelled/suspended or denied services from
schools
• Parents stated their children were denied a public education because of their
disabilities
• District defense: realized they had to provides services but could not due to a lack of
funds
“If sufficient funds are not available to finance all of the services and programs
that are needed...then the available funds must be expended equitably ...that no
child is entirely excluded from a publicly supported education...The inadequacies
of the District of Columbia Public School System... certainly cannot be permitted
to bear more heavily on the “exceptional” or handicapped child than on the normal
child.”
• Mills case decision: right to public education and procedural protections to
changes in school status (i.e., expulsion or suspension)
46. Congressional Investigations
After PARC and Mills court cases (and many others), Congress
conducted several investigations into the education of students
with disabilities and found students with disabilities were not
receiving education or training.
•Congress believed that children with disabilities could lead a
meaningful life, as “productive citizens, contributing to
society,” if they received a educational services
•From Congressional investigations and PARC and Mills the first
special education law was created in 1973 and 1975.
47. Elementary and Secondary Education Act of
1965 (ESEA)
Addressed the inequality of educational opportunity for
underprivileged children. This landmark legislation
provided resources to help ensure that disadvantaged
students had access to quality education.
• http://www.wrightslaw.com/law/art/history.spec.ed.law.htm#sthash.uCFu9M6E.dpuf
48. Rehabilitation Act of 1973
The RehabilitationAct prohibits discrimination on the
basis of disability in programs conducted by Federal
agencies, in programs receiving Federal financial
assistance, in Federal employment, and in the
employment practices of Federal contractors.
•Civil right law, prohibits discrimination including that of
persons with disabilities
•Section 504 (discuss later in training)
49. Education for All Handicapped
Children Act of 1975
Public Law 94-142
• First Special Education law (passed 1975, effective 1977)
• A result of lobbying from parents and deinstitutionalization advocates
• Intended to open schools to all students with disabilities so they could
“benefit” from special education
• Early focus on access
All children with disabilities would “have a right to education, and to
establish a process by which State and local educational agencies may
be held accountable for providing educational services for all
handicapped children.”
(`http://www.wrightslaw.com/law/art/history.spec.ed.law.htm#sthash.NnttL1sL.)
50. Pillars of PL 94-142
•Provide free and appropriate education to all students
with disabilities (FAPE)
•Applies to all students aged 3-21
•Applies to suspended and expelled students
•Educate students with disabilities in the same schools as
students without disabilities (LRE)
•Provide procedural safeguards (legal and practical
protections) for students with disabilities
51. Board of Ed. Of Hendrick Hudson Central
School District v. Rowley, 1982
• Parent asked for interpreter for child
• School denied services
• Case went to Supreme Court through appeals
• Interpretation of appropriate education
Education based on the students needs
We hold that the state satisfies the FAPE requirement by providing
personalized instruction with sufficient support services to permit the child
to benefit educationally from that instruction” (Rowley, pp. 203-204)
52. FAPE & Rowley
• Cadillac vs. Chevrolet of services
• Benefit needs to be meaningful
• Rowley requires more than just a minimal or trivial educational benefit
• Receiving passing grades and progress from year to year is not
necessarily sufficient evidence that a child is receiving FAPE
(300.101c(10))
53. Reauthorizations of IDEA/EAHCA
•1983: Amended
•1986:The HandicappedChildren’s Protection Act;The Infants
andToddlers with DisabilitiesAct
•1990:The Individuals with Disabilities EducationAct (IDEA)
•1992 & 1997: IDEA amended
•2004: IDEA amended to become Individuals with Disabilities
Education ImprovementAct (IDEIA)
54. Irving Independent School
District v.Tatro (1984)
• Stated that whether a medical service was a related service depends on who
provides it.
• Three prong "bright-line" test:
1) the child with a disability must qualify under IDEA for special education,
2) the service is necessary to aid the child with a disability to benefit from
special education, and
3) the service must be able to be provided by a qualified person other than
a physician. The bright line test is used to determine whether or not a
specific service is considered to be a related service (fundable under
IDEA) or a medical service (not fundable under IDEA).
55. Individuals with Disabilities Act of 1990
(PL 101-476)
• The EAHCA of 1975 was renamed the Individuals with
Disabilities Education Act
• “children” was replaced with the term “individuals”
• “handicapped” became “with disabilities”
• Significant change in attitude which focuses on person-first, not
disability-first
• Disabilities are now viewed as one aspect of a person, not their
sole identity
56. IDEA 1990
• Autism andTraumatic Brain Injury were identified as distinct disability
categories
• Rehabilitation and social work services were made available to students
with disabilities
• MandatedTransition Services
• IEP “Special Factors” include: Behavior Strategies and Supports; Braille
instruction and use of Braille if child is blind or visually impaired; Meeting
language needs if child is limited English proficient; meeting
communication needs if child is deaf or hard of hearing (1990)
57. IDEA 1990 -Transition Services
• Mandated by Congress
• Each student, no later than age 16 (Age 14 in KY), must have an
individual transition plan (ITP) as part of their Individualized
Education Program (IEP)
• ITP allows for coordinated set of activities
• ITP allows for interagency linkages designed to address post-
school functions
• Post-school functions addressed are independent living, vocational
training, and additional educational experiences
58. Individuals with Disabilities Education Act
(Amendments) of 1997
• Focus on improving the education of children with disabilities by:
• Identifying children with special needs before they enter school and providing services to
help them,
• Developing individualized education programs (IEPs) that focus on improving educational
results through the general curriculum,
• Educating children with disabilities with their nondisabled peers,
• Setting higher expectations for students who are disabled and ensuring schools are held
accountable,
• Strengthening the role of parents and fostering partnerships between parents and
schools,
• Reducing unnecessary paperwork and other burdens.
59. IDEA 1997
• Established the parameters for removing disabled students from school when they have behavior
problems.
• No cessation of educational services. Disabled students would statutorily be entitled to special
educational services, even if expelled from school for disciplinary reasons.
• increased reliance on mediation. Before parents could request a formal due process-hearing over a
dispute about the schooling of their disabled child, they would be offered mediation and encouraged
through counseling to try mediation first to resolve the problem.
• States would have to establish performance goals and indicators for disabled pupils as well as include
disabled pupils in statewide assessments and alternative assessments.
• Regular education teacher is a member of the IEP team
• Intended “to meet the unique needs of the student” through individualized instruction and/or providing
“related services”.
• Allowed for special education to take place in a variety of settings (along a “continuum” of services)
60. Individuals with Disabilities Education
ImprovementAct, 2004
•IDEA 2004
•Part A: General Provisions
•Part B: Education of All Children with Disabilities (3-21)
•Part C: Infants andToddlers with Disabilities (0-3)
•Part D: National Activities to Improve Education of Children
with Disabilities
61. Definition of Special Education
IDEA 2004
§300.39 Special education.
(a) General. (1) Special education means specially
designed instruction, at no cost to the parents, to meet
the unique needs of a child with a disability, including—
•(i) Instruction conducted in the classroom, in the home,
in hospitals and institutions, and in other settings; and
•(ii) Instruction in physical education.
63. 6 Major Principles of IDEA
1. Zero Reject: locate, identify, and provide services to all eligible students with
disabilities
2. Nondiscriminatory Evaluation: conduct an assessment to determine if a student
has a disability and if he or she needs special education services
3. Free Appropriate Public Education: Develop and deliver an individualized
education program of special education services that confers meaningful
educational benefit
4. Least Restrictive Environment: Educate students with disabilities with
nondisabled students to the maximum extent appropriate
5. Procedural Safeguards: Comply with the procedural requirements of IDEA (i.e.,
Parent Rights, Methods for Dispute Resolution)
6. Parental Participation: Collaborate with parents in the development and delivery
of their child’s special education program; they are vital members of the IEP team
64. Disability Categories as Defined by IDEA
2004
1) Specific learning disability
2) Emotional disturbance
3) Intellectual disability
4) Multiple disabilities
5) Deaf-blindness
6) Autism
7) Other health impairments
69. Additional Federal law →
No Child Left Behind (2001)
Students with disabilities must also meet AYP the
entire school faces corrective measures
• Includes students with most significant disabilities who
participate in alternate assessment
• More emphasis on access to general curriculum
70. Additional Federal law →
No Child Left Behind (2001)
Highly QualifiedTeachers
• Special educators must pass test of special education
knowledge AND
• Standard elementary curriculum (elementary)
• Core subject areas they teach (secondary)
71. Higher Education Opportunity Act, 2008
(PL 110-315)
This law covers a wide variety of issues related to higher
education. New provisions related to students with
intellectual disabilities, including definingComprehensive
Transition programs for students with ID, and funding
model demonstration projects and a National
Coordinating Center for those projects.
72. Elementary and Secondary Education:
A Blueprint for Reform
On March 13, 2010 the Obama administration released
its blueprint for revising the Elementary and
Secondary Education Act (ESEA), which would ask
states to adopt college- and career-ready standards
and reward schools for producing dramatic gains in
student achievement.
Raises standards for all students and
Sets a clear goal
July 15, 2010 Behavior Institute 2010 72
73. Every Student SucceedsAct (ESSA)
• U.S. House of Representatives
• Approved by a vote of 359-64
• U.S. Senate
• Approved by a vote of 85 – 12
• President signed on December 10, 2015
73
74. Every Student Succeeds Act,
2016 (ESSA)
•PRINCIPLES FOR REFORM
• College and Career-Ready Standards for America’s
Learners
• Rigorous Accountability for All Students
• Reform and Resources for America’s Struggling
Schools and Students
• New Incentives to Improve Opportunities and
Outcomes for Students
• A Smart and BalancedApproach toTesting
• Promoting Equity in State and Local Funding
75. Family Educational Rights and PrivacyAct
(FERPA)
• The Family Educational Rights and Privacy Act (FERPA) (20 U.S.C. § 1232g; 34 CFR
Part 99) is a Federal law that protects the privacy of student education records.
The law applies to all schools that receive funds under an applicable program of
the U.S. Department of Education.
• FERPA gives parents certain rights with respect to their children's education
records.These rights transfer to the student when he or she reaches the age of 18
or attends a school beyond the high school level. Students to whom the rights
have transferred are "eligible students."
76. FERPA
• Parents or eligible students have the right to inspect and review the student's
education records maintained by the school. Schools are not required to provide
copies of records unless, for reasons such as great distance, it is impossible for
parents or eligible students to review the records. Schools may charge a fee for
copies.
• Parents or eligible students have the right to request that a school correct records
which they believe to be inaccurate or misleading. If the school decides not to
amend the record, the parent or eligible student then has the right to a formal
hearing. After the hearing, if the school still decides not to amend the record, the
parent or eligible student has the right to place a statement with the record
setting forth his or her view about the contested information.
77. FERPA
Generally, schools must
have written permission
from the parent or eligible
student in order to release
any information from a
student's education record.
However, FERPA allows
schools to disclose those
records, without consent, to
the following parties or
under the following
conditions (34 CFR § 99.31):
• School officials with legitimate educational interest;
• Other schools to which a student is transferring;
• Specified officials for audit or evaluation purposes;
• Appropriate parties in connection with financial aid to a
student;
• Organizations conducting certain studies for or on behalf
of the school;
• Accrediting organizations;
• To comply with a judicial order or lawfully issued
subpoena;
• Appropriate officials in cases of health and safety
emergencies; and
• State and local authorities, within a juvenile justice
system, pursuant to specific State law.
78. FERPA
•Schools may disclose, without consent, "directory"
information such as a student's name, address,
telephone number, date and place of birth, honors and
awards, and dates of attendance.
•However, schools must tell parents and eligible students
about directory information and allow parents and
eligible students a reasonable amount of time to request
that the school not disclose directory information about
them.
79. Parents are Equal Partners
•Parents written in the law in 1975
•Advocates for their children
• Given various empowering capacities at IEP meetings
• Evaluation Consent
• Consent to Services
• Consent to Initial Placement
Schools demonstrate consistent progress in reading, math, and science scores from year to year
Parents allowed to transfer their student to another public school
School district has to provide technical assistance to school
Replacing staff
Implement different curricula
State takes over the school
While advocates credit the law for exposing test-score gaps among student groups, even the law's original cheerleaders acknowledge its mechanism for labeling schools that didn't make progress is too broad, its mandated tutoring remedies rarely boost student achievement and the 2014 goal that 100 percent of U.S. students be deemed "proficient" in science and math is unrealistic.
The law expired in 2007. Despite a few attempts, Congress has failed to rewrite it. After Congress missed Obama's fall deadline for refreshing the law, the administration began offering states relief from its toughest parts.
Unbridled learning- college and career ready
Teacher evaluation
Parents allowed to transfer their student to another public school
School district has to provide technical assistance to school
Replacing staff
Implement different curricula
State takes over the school
While advocates credit the law for exposing test-score gaps among student groups, even the law's original cheerleaders acknowledge its mechanism for labeling schools that didn't make progress is too broad, its mandated tutoring remedies rarely boost student achievement and the 2014 goal that 100 percent of U.S. students be deemed "proficient" in science and math is unrealistic.
The law expired in 2007. Despite a few attempts, Congress has failed to rewrite it. After Congress missed Obama's fall deadline for refreshing the law, the administration began offering states relief from its toughest parts.
Unbridled learning- college and career ready
Teacher evaluation