The U.S. Department of Education recently issued a request for comments in response to Executive Order 13777 that requires federal agencies to evaluate and implement measures to lower regulatory burdens on the American people. The request was open-ended and elicited comments on a wide variety of issues regarding federal regulation of education. Many of the responses were related to special education for students with disabilities.
The following comments are from Caroline Lahrmann, the mother of 17-year-old twins with profound intellectual and developmental disabilities (I/DD). Caroline is a resident of Columbus, Ohio.
I have divided these comments into two parts: Part 1 emphasizes issues related to special education in disability specific settings and Part 2 focuses on transition services and programs that serve students on the more severe end of the spectrum of disabilities.
[Over 1600 comments were submitted to the U.S. Department of Education - links to comments can be found here.]
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Introduction
As a parent of 17-year-old twins with profound intellectual and developmental disabilities (I/DD), I have concerns with Department of Education (DOE) regulation which limit opportunities for children with disabilities on the severe and profound end of the disability continuum. Programs that my children now access have been closed to younger entrants and I fear will be gone altogether when those who have been grandfathered in have aged out. Additionally, I see on the horizon a limiting of post-secondary options for children with severe and profound disabilities as disability-specific work and day programs are regulated out of existence, leaving some children with no path to meaningful post-secondary opportunities.
My children are not alone. There are thousands of children across the country who are born with severe and profound I/DD often accompanied by complex medical and behavioral conditions. There needs to be a place for these children in our educational system. The specialized nature of their conditions must not be trivialized and downplayed so as to fit into a neat, one-size-fits-all approach. Life is not that simple, especially for children with severe and profound challenges.
Misrepresentation of U.S. Supreme Court Olmstead Decision
In my children’s short life, I have seen burdensome regulation limit opportunities for children with I/DD. Their specialized school no longer accepts children under the age of 14 for fear of misguided lawsuits brought under the misrepresentation of the U.S. Supreme Court Olmstead decision. Post-secondary opportunities for individuals who cannot perform competitive work, such as sheltered workshops and facility-based day programs, are increasingly under attack by similar litigation.
The Olmstead decision was centered on ensuring appropriate residential accommodations for two adults with mental disabilities. It is now being misrepresented and applied to education and work settings with the goal of eliminating disability specific educational opportunities altogether.
The Olmstead decision did not eliminate disability specific settings that serve many individuals with I/DD in one facility, often referred to as institutional settings. Throughout their decision, the justices on the Olmstead Court emphasized the need for a range of settings for individuals with diverse mental disabilities and they spoke of the importance of institutional settings to protect health and safety for those individuals who cannot handle and benefit from community settings. Olmstead also made individual choice paramount in accessing services. Olmstead stated,
“Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States’ need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States’ obligation to administer services with an even hand.” Olmstead v LC 527 US 581, 597 (Emphasis added.)
“For the reasons stated, we conclude that, under Title II of the ADA, States are required to provide community based treatment for persons with mental disabilities when,
As a parent of 17-year-old twins with profound intellectual and developmental disabilities (I/DD), I have concerns with Department of Education (DOE) regulation which limit opportunities for children with disabilities on the severe and profound end of the disability continuum. Programs that my children now access have been closed to younger entrants and I fear will be gone altogether when those who have been grandfathered in have aged out. Additionally, I see on the horizon a limiting of post-secondary options for children with severe and profound disabilities as disability-specific work and day programs are regulated out of existence, leaving some children with no path to meaningful post-secondary opportunities.
My children are not alone. There are thousands of children across the country who are born with severe and profound I/DD often accompanied by complex medical and behavioral conditions. There needs to be a place for these children in our educational system. The specialized nature of their conditions must not be trivialized and downplayed so as to fit into a neat, one-size-fits-all approach. Life is not that simple, especially for children with severe and profound challenges.
Misrepresentation of U.S. Supreme Court Olmstead Decision
In my children’s short life, I have seen burdensome regulation limit opportunities for children with I/DD. Their specialized school no longer accepts children under the age of 14 for fear of misguided lawsuits brought under the misrepresentation of the U.S. Supreme Court Olmstead decision. Post-secondary opportunities for individuals who cannot perform competitive work, such as sheltered workshops and facility-based day programs, are increasingly under attack by similar litigation.
The Olmstead decision was centered on ensuring appropriate residential accommodations for two adults with mental disabilities. It is now being misrepresented and applied to education and work settings with the goal of eliminating disability specific educational opportunities altogether.
The Olmstead decision did not eliminate disability specific settings that serve many individuals with I/DD in one facility, often referred to as institutional settings. Throughout their decision, the justices on the Olmstead Court emphasized the need for a range of settings for individuals with diverse mental disabilities and they spoke of the importance of institutional settings to protect health and safety for those individuals who cannot handle and benefit from community settings. Olmstead also made individual choice paramount in accessing services. Olmstead stated,
“Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States’ need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States’ obligation to administer services with an even hand.” Olmstead v LC 527 US 581, 597 (Emphasis added.)
“For the reasons stated, we conclude that, under Title II of the ADA, States are required to provide community based treatment for persons with mental disabilities when,
(1) the State’s treatment professionals determine that such placement is appropriate;
(2) the affected persons do not oppose such treatment; and
(3) the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.” Olmstead, 607 (Emphasis added.)
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle and benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead, 601-602 (Emphasis added.)
Least Restrictive Environment
34 CFR 300.114(a)(2) Each public agency must ensure that -
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle and benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead, 601-602 (Emphasis added.)
Least Restrictive Environment
34 CFR 300.114(a)(2) Each public agency must ensure that -
(i) To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are non disabled are served in the least restrictive environment (LRE);
(ii) Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.
This regulation promotes integration for children with disabilities in order to expand opportunities, but when applied with too heavy of a hand, this regulation has removed opportunities for children with disabilities who benefit from specialized programming.
The elimination of disability specific education programs is occurring counter to IDEA. In my research of this issue, Jill Barker of the DD News Blog, provided the following information,
This regulation promotes integration for children with disabilities in order to expand opportunities, but when applied with too heavy of a hand, this regulation has removed opportunities for children with disabilities who benefit from specialized programming.
The elimination of disability specific education programs is occurring counter to IDEA. In my research of this issue, Jill Barker of the DD News Blog, provided the following information,
- IDEA does not rule out congregate or separate schools or classrooms if the child cannot be educated satisfactorily in a regular classroom and if the specialized placement is in accordance with the child’s IEP. In fact, IDEA and its regulations assure the appropriateness of services and placements for all children.
- An appropriate education is one that is in accordance with an IEP that has the important protection that it is written with the active participation of the child’s parent(s). When school districts eliminate separate classes or schools, they take away the determination of what is appropriate from the parents and IEP team and leave it up to a general arbitrary policy that may or may not work for the individual child.
- The assurance of an appropriate education is being overridden by the misinterpretation of LRE requirements, in much the same way that the misinterpretation of Olmstead is used to restrict services and placement options for people with I/DD.
Please see Exhibit A for a listing of the regulation supporting the assurance of an appropriate education. [This will be posted separately on The DD News Blog. JRB]
Just as gifted children benefit from special classes and curriculum specifically geared to their abilities, children with severe and profound I/DD can benefit from programming designed around their disabilities. In a specialized environment, rather than being told to keep up with non disabled children, children with significant disabilities can thrive.
I question why gifted students are allowed special programming, but students with disabilities are finding their specialized programming under attack.
We also must remember, that there are children whose I/DD is accompanied by complex medical and behavioral conditions that make daily transport to school inappropriate due to health and safety concerns. For these children, application of LRE that stigmatizes the supports that allow for education in disability specific educational settings or at one’s residence (such as their family home or an Intermediate Care Facility for Individuals with Intellectual Disabilities) has harmful consequences and can lead to the lack of availability of appropriate supports for some of our country’s most fragile children.
As a parent of children who attend a school for students with I/DD, I witness first-hand the benefits my children receive in an environment where all teachers and therapists have decades of experience teaching and serving children with I/DD, and where my children can interact with other children with the same challenges. Professionals at their school are passionate about the field of disabilities and have chosen to devote their careers to it. Their passion and their loving and patient personalities directly benefit the children they serve. The collaboration of many teachers and therapists in one setting allows for creative problem solving to address maladaptive behaviors or devise solutions to promote more functionality through adaptive techniques. This collaborative brainstorming happens daily in specialized school settings, settings that cannot be replicated in mainstream public schools.
Additionally, many public schools are not set up to handle conditions connected to children with disabilities such as safe transfers and lifts for quadriplegia, diapering, tube feedings, administration of medication, seizure disorders. Having appropriately trained and experienced nursing supports is essential to children with I/DD and so are teachers and assistants trained and willing to care for such concerns. Specialized schools are more able to have the staff on hand trained in these areas, and thus makes it more possible for children with complex conditions to leave their residences and interact with other children in a school setting.
Increasingly, however, disability-specific school-age programs are becoming van services rather than facility based learning centers. The push for community inclusion at all costs has led to students being forced into the community at all times, visiting the YMCA, the library, museums, etc., rather than spending time at school developing skills and learning. While non-disabled students attend field trips, they are not perpetually shuffled from one community activity to another just to satisfy another’s view of integration.
Finally, the educational experience should be outcome-oriented, meaning the least restrictive environment should be based on the individual and what affords the individual the greatest amount of independence and opportunities. My son can explore his school in his wheelchair and visit other classrooms independently. While my son is able to propel his chair, his intellectual disability does not enable him to understand hazards. As such, his independence in propelling his chair is greatly curtailed in a traditional public school with staircases, other hazards, and people who are not sensitive to his condition. Similarly, my son and daughter have access to therapeutic equipment at their school such as adaptive bicycles, gait trainers, and other equipment that allows them to develop physical and occupational skills. The special design of their school building enables them to use this equipment throughout the building giving them the maximum amount of freedom and opportunity. Such activity would be greatly impeded in a traditional school which is designed for non disabled children and may not have access to a wide variety of equipment and technical expertise. Additionally, my children participate in adaptive music concerts, track meets and swim meets. Such activities and competitions would not be available to them in a traditional public school where school events and teams are geared toward typically developing children. For these reasons, my children’s school is the least restrictive environment for them. The U.S. Supreme Court Olmstead decision recognizes this outcome-based, individual approach to disability accommodation,
Each disabled person is entitled to treatment in the most integrated setting possible for that person recognizing that, on a case-by-case basis, that setting may be in an institution. Olmstead at 605
Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times— perhaps in the short run, perhaps in the long run—for the risks and exposure of the less protective environment of community settings; for these persons, institutional settings are needed and must remain available. Olmstead, 605
For many mentally retarded people, the difference between the capacity to do things for themselves within an institution and total dependence on the institution for all of their needs is as much liberty as they ever will know. Olmstead, 605
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