INTRODUCTIONVAP – ADVOCACY – HISTORY - LAWS

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

Structure of Training Sessions

• Each training session will have 2-5 topics• At least 2 - 15 min breaks will occurWe 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

Training Norms•Be on time•Participate•Use your experiences but be ready to learn with an open mind

•Respects others’ backgrounds and experiences

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

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 private You Tube channel and complete competency quiz before the next week.

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 other VAP grads!

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?

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?

Do these policies work?What are the common implementation

problems in disability laws?

– Education– Housing– Employment– Health

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

Advocacy in Special Education:An advocate is someone who acts on

behalf of or for another person’s cause.

(Alper, et al., 1995)

Three Themes of Parent Advocacy1. Advocacy enhances coping2. Advocacy involves adversarial struggle3. Advocacy causes stress

(Wang, et al., 2004)

Advocacy Takes Many Forms

Advocacy can be formal and informal

Do you have any examples of informaland formal advocacy?

Informal Advocacy – Person-First LanguageConversations

Saying “Individual with Down syndrome” versus “Down syndrome person”Saying “Intellectual disability” instead of “mental retardation”Not saying the “R” wordSaying “student with a disability” instead of “disabled students

Modeling and teaching people first languageLearning your rights as an advocate or self-advocateNetworking

Formal AdvocacyLetter writingHiring an advocate or attorney (representation)

Affecting legislationGetting publicity or media coverageUtilizing procedural safeguards

Common Ways 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)

Why is it so hard forparents to advocate for

their child?

• 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)

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)

And on…•Who has the time?•Who has the money?•Who can emotionally distance themselves from their child?

(Cunconaan-Lahr & Brotherson, 1996)

How can we support parents inensuring their children receiveappropriate educationalservices?

We can provide them with effective and knowledgeable

special education advocates.

History of the VAPStarted in 2008 by Meghan BurkeEstablished to fill the void of special education advocates in Nashville

Over 300 trainees since thenCohort of 11 in 2008, grew to cohort of 42 in 20112008: 1 site in Nashville, 2011: 6 sites across the stateTrainees from more than 33 counties

Brought to KY for first time 2016 by Build Inclusion in partnership with HDI

This Training Has Five Goals:

1. To provide instrumental support2. To provide affective support3. To help at least four families per trainee4. To grow and improve our model5. To research advocacy trainings

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

A Quick History

• Generally, from exclusion to inclusion

• Outgrowth of movements in 1960s early 1970s

• Kennedy Administration• Institutional abuses• Philosophy of normalization

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

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??

1) Kennedy AdministrationA Family History (Rosemary)

A Strong Advocate(Eunice Kennedy Shriver)

Eunice Kennedy Shriver•Founder of Special Olympics•Pushed JFK to “do something” about intellectual disabilities

•Went public with…

Saturday Evening Post ArticleSept. 22, 1962Discussed:– family’s situation– Joseph P. Kennedy, Jr. Foundation– Efforts-advances– Focus on Hope– Major “coming out” for disabilities in US

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…”

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…

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.

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.

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.

Christmas In Purgatory: A Photographic Essay On Mental RetardationThere is a hell on earth, and in America there is a special inferno. We were visitors there during Christmas, 1965....

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

Wolf Wolfensberger (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

Together, these led to…•Civil rights legislation for persons with disabilities and their families

•Special Ed laws (PL 94-142; IDEA)•Rest of VAP (so I will not elaborate…)•And “Disability Infrastructure”

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

Via the Web•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

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 butequal’ has no place. Separate educational facilities are inherently unequal…” “In these days, it is doubtful that any child may reasonably be expected tosucceed in life if he is denied the opportunity of an education. Such anopportunity, where the state has undertaken to provide it, is a right that mustbe available to all on equal terms.” – Chief Justice Earl Warren

Pennsylvania Association for Retarded Children (PARC) v. Pennsylvania, 1971• PARC (parent advocacy group) led the charge to change PA law that denied

services tochildren 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 termFree 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.”

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)

Congressional InvestigationsAfter 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.

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

Rehabilitation Act of 1973The Rehabilitation Act 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)

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 accessAll 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.)

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

Board of Ed. Of Hendrick Hudson CentralSchool 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 needsWe 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)

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))

Reauthorizations of IDEA/EAHCA

•1983: Amended •1986: The Handicapped Children’s Protection Act; The Infants and Toddlers with Disabilities Act

•1990: The Individuals with Disabilities Education Act (IDEA)

•1992 & 1997: IDEA amended •2004: IDEA amended to become Individuals with Disabilities Education Improvement Act (IDEIA)

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).

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

IDEA 1990•Autism and Traumatic Brain Injury were identified as distinct disability categories

•Rehabilitation and social work services were made available to students with disabilities

•Mandated Transition 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)

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

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.

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)

Individuals with Disabilities EducationImprovement Act, 2004

•IDEA 2004•Part A: General Provisions

•Part B: Education of All Children with Disabilities (3-21)

•Part C: Infants and Toddlers with Disabilities (0-3)•Part D: National Activities to Improve Education of

Children with Disabilities

Definition of Special EducationIDEA 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.

The purpose of IDEA is to…

Assure that all children with disabilities have available to them…a free public education which emphasizes special education and

related services designed to meet their unique needs, to assure that the rights of children with disabilities and their parents or guardians are

protected, to assist states and localities to provide for the education of all children with

disabilities, and to assess and assure the effectiveness of efforts to educate children with

disabilities. (IDEA, 20 U.S.C. & 1400©)

6 Major Principles of IDEA1. Zero Reject: locate, identify, and provide services to all eligible

students with disabilities2. 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

Disability Categories as Defined by IDEA 2004

1) Specific learning disability2) Emotional disturbance3) Intellectual disability4) Multiple disabilities5) Deaf-blindness6) Autism7) Other health impairments

Disability Categories (cont.)

8) Traumatic brain injury9) Speech or language impairments10)Hearing impairments11)Visual impairments12)Orthopedic impairments13)Developmental delays (ages 3-9)

Related Services•Audiology•Counseling•Early identification•Family training, counseling, home visits•Health services•Medical services•Nursing services•Nutrition services

Salend Creating Inclusive Classrooms: Effective and Reflective Practices, Sixth Edition Copyright © 2008 by Pearson Education, Inc. All rights reserved.

Related Services (cont.)

•Occupational therapy (skills)•Orientation and mobility services•Parent counseling and training•Physical therapy (bones and muscles)•Psychological services•Recreation and therapeutic recreation•Rehabilitative counseling •School health services

Salend Creating Inclusive Classrooms: Effective and Reflective Practices, Sixth Edition Copyright © 2008 by Pearson Education, Inc. All rights reserved.

Related Services (cont.)•Service coordination (formal coordination of services by a separate entity)

•Social work services•Speech pathology and speech language pathology

•Transportation and related costs•Assistive technology and services

Salend Creating Inclusive Classrooms: Effective and Reflective Practices, Sixth Edition Copyright © 2008 by Pearson Education, Inc. All rights reserved.

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

Additional Federal law → No Child Left Behind (2001)

Highly Qualified Teachers

•Special educators must pass test of special education knowledge AND

•Standard elementary curriculum (elementary)•Core subject areas they teach (secondary)

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 defining Comprehensive Transition programs

for students with ID, and funding model demonstration projects and a National Coordinating Center for those projects.

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

Every Student Succeeds Act (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

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 Balanced Approach to Testing•Promoting Equity in State and Local Funding

Family Educational Rights and Privacy Act (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."

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.

FERPAGenerally, 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.

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.

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

Resources• http://www.wrightslaw.com/law/art/history.spec.ed.law.htm• http://www.ada.gov/cguide.htm#anchor65610• http://www.wrightslaw.com/bks/lawbk/ch3.history.pdf• see additional resource page