1
Special Education: From Institutions to Inclusion
Erin Cataldo
It was 1947 and there were children living in filthy, cramped quarters without adequate
food and clothing. This place was called Willowbrook State School. Willowbrook was a facility
for children with mental disabilities and was operated by the New York State Department of
Mental Hygiene. The school was designed to provide services for 4000 children, but the
population grew to over 6000.
The institution’s purpose was to provide children with disabilities with food, shelter,
clothing, and love. These are basic needs that could not be met by their families or the staff of
the school. The families that still wanted to remain a small part of their children’s hopeless lives
were allowed to visit on each Sunday. Some family members reported that they could hardly
even move through the wards to get to their child’s room. There were children just lying all over
the place. The facilities reeked with the scent of sweat, human urine, and feces. The children
were dirty and very thin.
Willowbrook’s proper name should not have included the word “school”. Robert F.
Kennedy referred to Willowbrook as a “snake pit”. Due to lack of staff, basic hygiene and
educational needs were not ever met. A meal and a bath, two things we take for granted, were
sadly not guaranteed to the patients on a daily basis. The patients lacked social, emotional, and
behavioral support and training, which led to unsafe and inappropriate interactions among the
children and staff. Many of these children suffered injuries due to the lack of supervision by
staff.
The public became aware of the conditions, scandal, and abuses that were occurring at
Willowbrook. In 1972, Geraldo Rivera, an investigative reporter, uncovered and reported on the
2
deplorable conditions at Willowbrook. The series of investigations brought to light the
overcrowding, the lack of sanitary facilities, and the physical and sexual abuse of the residents
by the members of the school staff. Because of this controversy, a class-action lawsuit was filed
against the state of New York in March of 1972. It wasn’t until May of 1975 when a settlement
was agreed upon in this case. The Willowbrook Consent Decree was signed to improve
community placement for the “Willowbrook Class”. Due to the publicity that was generated by
the case, the Civil Rights of Institutionalized Persons Act (CRIPA) was signed in 1980.
CRIPA was a federal law that was designed to protect the rights of people in institutions
who had intellectual and developmental disabilities. This act allowed the department of justice
to protect the rights of people who were in the care of state-operated institutions. The law wanted
to ensure the safety of those individuals and to provide with them of an avenue to report issues of
abuse.
In 1983, the state of New York announced the closure of Willowbrook State School. By
March of 1986, the number of children living at the newly-named Staten Island Developmental
Center was reduced to 250 residents. Finally, the last child left the grounds on September 17,
1987. The closing of the institution required the Office of Mental Retardation and
Developmental Disabilities to provide community placement options for the Willowbrook Class
members.(Fisher,1996)
Prior to the closing and the deinstitutionalization of children with intellectual and
developmental disabilities, the Pennsylvania Association for Retarded Children (PARC) filed a
lawsuit against the Commonwealth of Pennsylvania. The landmark decision in 1971 extended
universal public educational laws to retarded children as a constitutional right. PARC argued
that all mentally retarded children can benefit from an educational program. The law guaranteed
3
Free Public Education to all children from the ages 6 to 21. An agree was reached without an
actual court hearing because the state admitted that it had violated the 14th amendment rights to
due process by denying one segment of the population, retarded children, access to the education
provided to the rest of the people. It agreed to place mentally retarded children in appropriate,
free, public, education programs. A similar case was also filed against the District of Columbia
Board of Education by Mills. Mills and PARC agreements were responsible for the passage of
Education for All Handicapped Children Act of 1975. ("Encylopedia of american," 2011)
Public Law 94-142 required every state and local school district who receives federal
funds to find and educate at the public’s expense all handicapped children in its jurisdiction,
regardless of the nature or severity of a child’s handicap. Although few states had good special
education programs, many parents had to assume the financial responsibilities of private day
school or institutional care because their handicapped cost more than public education could or
would pay. With Public Law 94-192, Congress made it clear that public schools would educate
handicapped children at public expense. Schools had spent billions of dollars under Title I of the
Elementary and Secondary Education Act to improve quality education for other minority
children. With this law, Congress decided that we needed a national commitment to do the same
thing for the most underserved minorities of all-handicapped children.
For children 6 to 17, the law indicates that the state and local school districts must make
reasonable efforts to locate handicapped children in the district and give priority to the most
severely disabled. They were required to evaluate the learning needs of each child and develop
and individualized education program (IEP) to meet those needs. They were required to place
children in the least restrictive environment and had to evaluate the child’s progress and make
4
changes if needed. The final component allowed parents to challenge school decisions if they
felt the services were not meeting their children’s needs.(Boyer,1979)
The deinstitutionalization of children from state-operated facilities and the early Supreme
Court cases for education were the building blocks for the community based and inclusionary
services that are provided to children and families today. With the deinstitutionalization
movement, residential and community rehabilitation services for young children and young
adults were developed.
The Department of Public Welfare through the Office of Mental Retardation Services
provided funding to county MH/MR offices for residential support services to meet the needs of
these children. The primary purpose of group homes was to provide a community residential
setting to ensure that children and young adults were receiving assistance to achieve their
maximum potential in the least restrictive environment. The range of services included teaching
socialization skills, problem solving techniques, self-care skills, daily routine activities, and
household and personal hygiene. It also promoted community involvement which included the
use of public transportation, accessing medical services, using shopping centers, eating out in
restaurants, and attending sporting and recreational activities.
Following the community support movement, Pennsylvania started the “Person/Family
Directed Support Waiver” in 1999. Most people with intellectual and developmental disabilities
are eligible for Medical Assistance. Medical Assistance is a program that provides funding for
health care services. The “Person/Family Directed Support Waiver” shifted the funding for
children to live in group homes back to their families, so they can access the services they need
at home. In keeping with the deinstitutionalization of children, Congress decided that states
should shift their funding to provide resources at home instead of an institutional setting.
5
Congress gave states the flexibility to create their own programs of home and community-based
services.
In order to receive approval for a home and community-based waiver, a state must
demonstrate that the waiver cannot be greater than the cost of institutional services. The menu of
services for the consolidated waiver includes case management, residential programs, day
habilitation, pre-vocational services, supported employment services, educational services, chore
services, private duty nursing, specialized therapy, permanency planning for children and youth,
respite care, environmental accessibility adaptations, and transportation.
The P/FDS Wavier includes residential programs, day habilitation, pre-vocational
services, supported employment services, chore services, respite cares, environmental
accessibility adaptations, transportation, expanded therapy services, adaptive appliances, visual/
mobility therapy, behavior therapy, and visiting nurse. ("Disability adovacy support," 2012)
The Individuals with Disabilities Education Act (IDEA) is a United States federal law
that oversees how the states and public schools provide early intervention, special education, and
related services to children with disabilities. IDEA first came into being in the year 1990. IDEA
only applies to states and educational agencies that accept educational funding under the IDEA.
IDEA was originally created by Congress in 1975 to ensure that children with disabilities have
the right to a free, appropriate, public education. IDEA has been amended a number of times
with the most recent one being in December of 2004. IDEA 2004 clarifies the intended outcome
for each child with a disability. Students must be provided a Free Appropriate Public Education
(FAPE) that prepares them for further education, employment, and independent living. Special
Education and related services have to meet the unique learning needs of all eligible children
with disabilities from preschool through age 21.
6
Children with disabilities who qualify for special education are automatically protected
by Section 504 of the Rehabilitation Act of 1973 and under the guidelines of Americans with
Disabilites Act.
The changes to IDEA in 2004 were to align with the requirements of the No Child Left
Behind Act. (NCLB) NCLB allows financial incentives to states who improve their special
education services for all students. ("Idea: The individuals," 2012)
The Gaskin v. PDE Settlement was filed on June 30, 1994. The Gaskin family filed the
lawsuit on behalf of school-aged students with disabilities who have been denied a FAPE in
regular education classes with individual supportive services, or those who have been placed in
these classrooms with supportive services which they require to be successful in the regular
education classroom setting. The goal of these changes was that local school districts increase
their capacity to provide supplementary services in regular education classrooms that students
with disabilities need to receive a meaningful benefit. This settlement further enhances the
policies and laws which are already in existence. (Grossman, 2005)
We have come a long way from the halls of Willowbrook. Deinstitutionalization remains
the goal of many states and policy makers continue to facilitate the closures of state-operated
institutions, so that they can meet the needs of people with intellectual, developmental, and other
physical disabilities in a community-based setting. Parents now have safeguards in place to
protect the rights of their children with disabilities and to ensure that all children, regardless of
their disability receive a Free Appropriate Public Education. Unlike the procedures that were in
place at Willowbrook, parents now have the opportunity to review their full educational records,
to participate in team meetings, and to be completely involved in placement decisions. Parents
are now equal partners on the IEP team along with teachers, staff, and school personnel. They
7
have a right to request mediation or due process and to file complaints with the state system if
they feel their rights or the rights of their child have been violated. Parents didn’t have the same
opportunity and knowledge to protect their children when they were placed in state-operated
instiutions.
8
Works Cited
Fisher, J. (Director) (1996). Unforgotten: 25 years after willowbrook [DVD].
Encylopedia of american education. (2011, September 21). Retrieved from http://americaneducation.org/1511-pennsylvania-association-for-retarded-children-v-commonwealth-ofpennsylvania-parc-decision.html
Boyer, E. (1979). Public law 94-142: A promising start?.Educational leadership, 298-301.
Disability adovacy support hub. (2012). Retrieved from http://dash.drnpa.org/file/mr-waiver.pdf
Idea: The individuals with disabilities education act. (2012, April). Retrieved from
http://nichcy.org/laws/idea
Grossman, E. (2005, June 25). Special education lawsuit settlement in pennsylvania brings hope
to parents. The morning call, p. 1.