What is inclusion?

Inclusion is placing persons with mental retardation and developmental disabilities in so-called "normal" environments of where they live, work and play.

Support Services
Least Restrictive Environment
Vocation
A Rising Tide
Education
Criminal Justice

Support Services

Support services for children and adults with developmental disabilities must conform to the following principles: 

1. Disability is not a unitary concept. Persons with developmental disabilities are not a homogeneous population. 2. Although some persons with developmental disabilities also have physical handicaps, developmental disabilities are distinct from physical handicaps; most persons with developmental disabilities don’t have physical handicaps. Thus the impact of accessibility is different on children with mental retardation and cerebral palsy than on cognitively normal adults with a paraplegia - even though both may be mobile only with the aid of a wheel chair. 3. While it may be “politically incorrect” and offensive to some self-appointed leaders in the disabilities rights community, and while it does represent but a first level simplification of a much more complex phenomenon, it is nonetheless true that the functional abilities of persons with mental retardation may accurately be described through the use of a mental age equivalent. Thus the rights of persons with mental retardation to independent living, supported employment, sexual activity, childrearing and parenting need to be viewed against the background of such mental ages as 12 years, 8 years, 4 years or two years. Would a parent allow a cognitively normal 8 year old to decide to live on her own or have a baby? Most parents would judge neither her cognitive competence, nor her emotional maturity ready for such a decision. Yet an adult with developmental disabilities who may have a mental age of 8 years is being denied such protection. Instead they and we are being told they have such a right. Selected professionals, organizations and leaders in the field are currently arguing for the fiscal and ethical supports for such social experimentation while ignoring the devastating impact on the person with developmental disabilities and their families. Rights and opportunities previously denied and now available to those with isolated physical handicaps are now being inappropriately asserted as similar rights for those more cognitively limited and socially vulnerable - often with devastating consequences. 4. While specific medical etiologies fro any given disability may not be of overriding importance in determining services and supports, there are nonetheless, specific genetic syndromes and recognizable neurobehavioral patterns that present serious considerations that must be addressed in the development of a service plan. Thus, for instance, the type and level of support services for persons with Prader-Willi syndrome or autism are relatively independent of their level of mental retardation and are much more related to the behavior medical implications of the specific syndrome. 5. Similarly, although some persons with developmental disabilities have emotional disorders and qualify for psychiatric diagnoses, developmental disabilities are distinct from emotional disorders and psychiatric diagnoses; indeed most persons with developmental disabilities do not have emotional disorders and psychiatric diagnoses. Aggressive and acting out behaviors that are a neurological determined component of certain mental retardation syndromes may require extremely different approaches and environments than those needed for persons with schizophrenia. Current policies place these neurologically driven persons with mental retardation in unprotected and under-structured environments, thus escalating the behavior which then becomes psychiatrically labeled and chemically managed. All this because they have the “right” to full inclusion. What ever happened to their “right” to equal protection? The use of chemical restraints should be determined by the etiology behind the behavior and the needs of the person with mental retardation, not by the needs of the caregiver. Although specific medical and diagnostic considerations do not address the theoretical appropriateness of full inclusion, such considerations can pose serious and perhaps insurmountable restrictions on the applicability of full inclusion either in a classroom, supported living, or supported employment environment. 6. An ideological commitment of resources to a social and theoretical perspective that denies any individualization of service provision in favor of a single approach is fundamentally a denial of appropriate services. For the person with a high need for structure and lessened stimulation, full inclusion is a more restrictive environment than a protected living and working situation. Assuming competence where none exists is simply a cheep means of denying services.

The Knights of Columbus Developmental Center at Cardinal Glennon Children’s Hospital and the Division of Developmental Pediatrics of St. Louis University School of Medicine strongly support the reservations of Mentally Retarded Citizens of Missouri (and of the many other concerned parent groups for both mental retardation and other developmental disabilities at both a state and national level) regarding the mechanical and unthinking application of rigid ideological principles that astonishingly impact on the lives and futures of children and adults with developmental disabilities. It is the measure of a civilized society that it affords the greatest protection to the rights and needs of those who are the most vulnerable. Recent years have seen a number of dramatic changes for the better for persons with developmental disabilities. Let us work so that the latest revolution does not cannibalize the advances and undo progress of earlier, more successful efforts.

By Barbara Whitman, PhD

Least Restrictive Environment

The last decade of the 20th century has seen a dramatic push toward individual settings in education, the workplace - and 
residential placement by professionals in the field of mental retardation. The Mentally Retarded Citizens of Missouri  continues to believe that too many persons are being placed in these community environments inappropriately.

Many professionals continually interpret “the least restrictive environment” as a physical, special concept i.e. no walls, no barriers, no congregate settings, minimum supervision, minimum protection, etc.

The Mentally Retarded Citizens of Missouri interprets “the least restrictive environment” as an environment where an individual can maximally function.

All to often-physical handicaps are identified with developmental disabilities. All disabilities are not the same and therefore must be managed differently.

Many providers and communities do not have the ability to implement and train the staff or provide support services necessary to appropriately absorb and protect their most vulnerable citizens. To quote Dr. Barbara Whitman, “All this because they have the “right” to full inclusion. What ever happened to their “right” to equal protection”?

Vocation

The following are excerpts from a speech by President Bert Sterbenz delivered to attendees at the October 29, 1996 public meeting of the Greater St. Louis Parents Advocacy Group for Mentally Retarded Citizens, Inc.

I’d like to state the purpose of this organization as our name implies. We are Parent Advocates for our mentally retarded children regardless of their age. The word parent is important here.

There are many professionals in the field of mental retardation who have many theories - some good - some not so good - and some downright destructive - about the services which should be provided to our special children and how they should live their lives. We must remember that these professionals make our children their livelihood. We, the parents have no vested interest other than the happiness and well being of our children. We, the parents, through our power as voters and taxpayers can and should have the final say on these matters. Indeed we, the parents have the most intimate experiences regarding the needs of our children. The buttons some of us wear which say “parent Power” remind us that we have the power to change things if we but exercise that power.

There is another important word regarding this organization. It is CHOICE. There is great, diversity in our children - in their abilities and what is required for their happiness. Some professionals tend to force all special children into one mold. We know that what is good for one person may be totally inappropriate for another. Choice is important. At times we as a group appear to be against “inclusion”. This in not the case. We are against “inclusion” ONLY where it is inappropriate for an individual or so expensive that it robs other MR/DD citizens of their fair share of available money. On the other hand, most of our advocacy is for the needs of our children which are NOT being met by professionals and their agencies. Supported living, supported employment and other inclusive programs are now politically correct. Sheltered Workshops, Group Homes and group recreational programs for MR/DD persons are not - so it is these that most often need our advocacy.

We received no tax money, not grants. We are therefore independent of influence by any governmental agency. Our only source of funding comes from your membership dues. Early this year we became aware of a Missouri Senate Bill 707. We sent you a letter about it in February. This bill was touted to be a means for sheltered workshops to become more competitive. It would have allowed up to 25% non-disabled persons to be hired in a workshop. It was widely supported by workshop managers.

When we read the bill, we found many other things buried inside. It redefined mentally retarded as disabled. This would lay the ground work for persons defined as disabled under the Americans with Disabilities Act to be served by our workshops. Do we want recovering alcoholic and drug addicts preying on our retarded sons and daughters? The bill also gave the Department of Education broad new powers to abolish existing workshops which they deemed no longer needed. To fight this bill we wrote letters to every Senator in the state and all representatives in St. Louis, St. Louis County, and St. Charles County. We also wrote all the workshop boards and managers in the St. Louis area. One very effective letter was written for our group disputing the claims of the president of the Missouri Association of Sheltered Workshop Managers which praised SB707 and insulted parents groups such as ours. It was published statewide by the Mentally Retarded Citizens of Missouri. The bill was defeated. 

Why would professionals support such a bill? We can only guess at the answer. Anyone who wanted to kill sheltered workshops and promote competitive employment for all would certainly be for it. Also workshop managers and professionals might find themselves in control of a great deal more public funds if their operation included Americans with Disabilities clients as well as the MR/DD community.

BUT - get this - while we were working to defeat SB707 this same group of professionals were very busy with another bill with even broader implications. This bill, Senate Bill 912, would allow SB40 boards like the PLB to spend money on purposes other than those for retarded citizens. Fortunately, with the help of Jerry Ford and the Mentally Retarded Citizens of Missouri, it died in committee and never reached the Senate. We can expect, however, that this same group will try again next year.

A Rising Tide Should Raise All Boats!

Is it fair to give Cadillac service to select individuals while condoning large waiting lists?

Is it fair to deny service to one and give another 24 hour attendant care at a cost of $300 per day?

Is a higher cost per day guaranteeing better quality care, or is the additional money going into the pockets of administrative agencies?

Mentally Retarded Citizens of Missouri believes that common sense must be restored to “placement” of mentally retarded adults.

Habilitation Centers provide sophisticated around-the-clock care at reasonable rates.

Group Homes are peer friendly, cost efficient environments that serve a large segment of the handicapped population.

Individual Supported Living is an appropriate choice for higher functioning persons provided adequate money and support are available.

Sheltered Workshops foster self-esteem and pride in a job well done.

Supportive Employment creates a sense of community for higher functioning individuals.

State Schools provide an appropriate setting for the severally handicapped eliminating the disruption of the normal  classroom environment.

Tunnel vision is not healthy. Problems arise when individuals and groups espouse their preferences i.e. “full inclusion” and others as the only answer. 

Mentally Retarded Citizens of Missouri believes that the total continuum of programs and services are correct when appropriately applied.

Mentally Retarded Citizens of Missouri urges agencies and professionals to reexamine their practices to ensure that the total continuum of programs and services are available to the clients, parents and guardians.

Education 

Mentally Retarded Citizens of Missouri supports the full continuum of family choices in education, work and living environments. We hit a nerve with Joseph Bauers’ article in our April 1999 issue. He believes that full inclusion in the classroom is inappropriate.

Mr. Bauers’ article provided the most activity on our website (www.rcomo.org) to date. Response has slowed recently. However, we note that responses to full inclusion in the classroom ran about 50/50 throughout he year. It is an issue that needs continual thought and input at the local level.

We would like to hear from you on any issue. Open discussion is essential for understanding the complexities of service to persons with Mental Retardation.

Following is the article written by Joseph Bauers.

Going Too Far For Disabled Children

By Joseph Bauers

A new student will be coming soon to an Illinois third-grade classroom. He cannot speak; he cannot read; he cannot walk. He can go only a minute or so without drooling. He has no bladder or bowel control. Like an infant, he needs frequent changes. He makes wild, uncontrolled movements and loud, involuntary noises. Whether he can learn anything – beyond simple gestures indicating yes or no – is, as of yet, unknown.

But this child, like thousands of others around the country, is part of a little known revolution in education. It is called total inclusion, and it proposes the removal of disabled and retarded students from special education and their reassignment to regular classrooms.

In my 26 years in the public schools, I have seen any number of inane ideas spawned by bureaucrats, but this notion stretches the bounds of rationality. It is so wrong and so ill timed that it challenges our very capacity to wonder.

Behind this movement is a hard-core of parents, lawyers, advocacy groups, college professors and education bureaucrats – all of who are working hard to impose a tyranny of the minority on the rest of us. And they are doing so under the guise of helping those children least able to help themselves.

The premise of this idea is simple: Disabled children should be afforded the “lease restrictive environment” in which to learn. Advocates usually define this as the school and classroom the children would attend where they not impaired. To do anything else, they argue, is to segregate these students and, therefore, to discriminate. Society, they say, needs to see these children as persons, not as freaks. And, of course, no one could argue with such a sentiment.

But the proponents of this point of view have a take-no-prisoners attitude. The efforts made in recent years to make special-education classes part of the school community – and to educate regular students about their disabled peers – have not been enough. These persons mean to end special education, as we know it; they offer no room for compromise.

They often enlist state bureaucrats and state boards of education, which usually prove to be eager accomplices. The game plan involves constant pressure on both the legislature and the judiciary. Advocates lobby tirelessly to pass favorable laws, and they threaten local districts with lawsuits. To this end the Illinois state board, for example, has reportedly set aside $1000,000 to assist individuals in legal challenges that promote total inclusion. Against such resources, local districts, which often have difficulty meeting their payrolls and buying textbooks, usually capitulate.

The result is a situation in which a teacher totally untrained in the special needs of such a child will not bear the primary responsibility for his education. In theory, that teacher will be assisted by a special-education teacher – acting as a consultant – and by trained aides.

But the likely reality is quite different. Even when all disabled students have been clustered together in special-education classes, the number of teachers trained to serve their unique needs has been small. Now, with these students scattered in classrooms far and wide, that talent pool will be stretched even further. And the special equipment they need will now have to be duplicated in classrooms everywhere.

All of this will cost a great deal. State government, which is fond of issuing mandates that it has no intention of funding, has laid yet another burden of the doorstep of the local school. Districts that have sustained one budget crunch after another, with no relief from the state, will now be expected to implement this radical and expensive program.

However great the price tag, it cannot compare to the human cost. The inclusion of masses of special-education students in regular classrooms will mean a kind of exclusion for the rest of the students. They will be excluded from their teacher’s attention, relegated to a secondary status until the compelling needs of the newcomers are met first. And the classroom teacher, who has had all the social problems of a crumbling society dumped in her lap, will have one more added to her burden – and all the while she will still be expected to produce better test scores.

What of the special-education students themselves? Are their unique problems really best served by a teacher who has been trained in academics but not in learning disabilities? We need to ask ourselves this: How did the notion of special education come about in the first place? The answer is simple: Long ago we recognized that children with disabilities had the best chance to succeed in an environment designed for them, where they could be taught by teachers trained to help them overcome their impairments.

Our heart go out to anyone with a disability and to any parent who knows the pain of a disabled child, But the anguish of such persons, however real, must not drive our school. What should drive them is a sound, balanced program that integrates those special students who can truly benefit from it into regular classrooms – but a program that still offers those thousands with acute problems the kind of expert teaching that they deserve.

In a society awash in victims, we are proposing to create yet another victim class. The advocates of this cause, who act more out of self-interest than altruism, are turning school children into pawns in a social and political struggle. And those children, both with and without disabilities, deserve better.

Respond to info@rcomo.org

The following are responses to the article Going To Far For Disabled Children by Joseph Bauers.

Dear Sirs;

As a physician who has patients with disabilities, as a father of two school aged children, as a former member of YARC, and as the husband of a school board member, I found Mr. Bauer’s article will written and increasingly applicable throughout our communities. Indeed the forced “full inclusion” in classrooms is producing poor learning situations not only for those with handicaps but also for those other children whose education is being disrupted. Rather than “acceptance” that disabilities are normal, this “inclusion” is more likely to cause backlash against those children with disabilities. And all because a vocal minority have forced this idea upon the majority.

I believe the intensity of the negative replies to Mr. Bauer also points out the raw emotions that guide those who pursue “full inclusion” in regular classrooms. The bankruptcy of their arguments leaves them with only emotional appeals. And no matter how we may desire or pretend differently, there are those persons who are indeed limited in their development and capabilities. To pretend differently will unfairly limit those children capable of achieving more, build resentment against those children with handicaps, hurt small schools with limited resources and do nothing to advance the education of those children with disabilities.

Mr. Bauer’s Article was widely circulated among teachers in our school system as it echoed a majority opinion that is rarely expressed out of deference to hose with handicaps. There is an old quote that fits Mr. Bauer’s article well…” As scarce as truth is, the supply has always been in excess of the demand.” I hope that he will continue to supply us with the truth no matter how many rocks come his way.

Sincerely,

R.S., MD

April says: “I am the mother of an 11 year old daughter with autism. In the name of mainstreaming and inclusion, my daughter has been denied services that could help her to one day become independent. I see inclusion as the public school’s latest bandwagon to justify them not providing appropriate services to my child.”

Kimberly informs: “I work as a Pediatric Nurse Practitioner and child advocate. I fiercely object to the inclusion of non- communicative children in the public classroom. When the class is working on long-division, I find the placement of a child who can not even control their drool or elimination into that class to be ridiculous!! We do not advance “normal” children simply because of age who are not meeting minimal requirements. Why then do these handicapped children qualify for such placement?”

Mike says: “We cannot be ashamed of our children. We must be proud of them. We must give them every opportunity to become all they can be.”

Peggy writes: “I can only hope that Mr. Bauer is the minority I this case and that the majority are compassionate and open to change.”

Susan wrote: “If parents of disabled children want specialized programs that are more expensive than a normal child gets, let them pay for them just as a parent with a normal child has to do.”

Debra explains: “I haven’t given a lot of thought to how total inclusion will impact the life a child who is as severe and profound as the child described in Mr. Bauer’s article. My child needs the model of his typical peers to function at his highest capacity. If he were given an aid, there is certainly no reason why he couldn’t thrive, learn and be educated in a regular classroom.”



Mike believes that: “Putting a child with special medical needs, full time in a regular classroom will NOT teach “normies” compassion. It would be great if it did. But it doesn’t.”

Ed states: “We believe in Special Education Programs. We are parents of a former special ed student and truly appreciate all that has been done for him.”

Harriet vents her frustration with: “As a speech-language pathologist working in the public schools since 1977, I want to tell you that I AGREE TOTALLY with this article. Also, I am at the point of leaving my position in my home community for another professional setting. WHY? Because the paperwork burden and excessive meetings on children have increased so that I do not have time to plan therapy or even see my children for therapy. WE are so busy having IEP meetings, writing assessment reports, and documenting so that some special ed lawyer won’t sue us that the child is really suffering more I the long run. What a crazy mixed up place the world has become.”

Rose e-mailed: “Special Ed teachers are not so good in general. Their training is poor as far as I am concerned. They have low expectations for the children and they just propagate the status quo.”

Sue respond: “The unfortunate part of Mr. Bauers’ article is his lack of acknowledgment that individuals with disabilities are a part of our everyday lives and whether or not it is appropriate for them to be in a fully inclusive classroom is not for him to say.”

Mike commented: “What about children like mine who have blossomed in an inclusion atmosphere? A child who will graduate with his peers on schedule? What if he had been denied the opportunity to grow, to demonstrate his ability?”

Martha stated: “Full time mainstreaming, while sounding idyllic and hopeful could be based on false hopes. Putting a child with special medical needs full time in a regular classroom will NOT teach “normal students” compassion. It would be great if it did. But it doesn’t.”

Peter has a strong opinion: “I submit that you are probably well-intentioned, but utter lacking in common sense and any understanding of economic reality. Please, get well soon before you do too much damage to minorities who really could succeed if given the opportunity.”

Debra e-mailed: “My child is at this time in a self-contained special education classroom. He has no physical disabilities and looks completely typical. He has some mild to moderate learning disabilities. As a parent advocate, I and many others in our county have been fighting for inclusion here for our children. He needs the model of his typical peers to function at his highest capacity.”

Ed said: “We believe in Special Education Programs. We are parents of a former Special Ed student and truly appreciate all that has been done for him, and feel that these rights should not be taken from others.”

Elaine commented: “You seem to have little information about the failure of segregated special education programs to educate your children. It appears that you do have some understandable concerns about the impact of inclusion on yourself and other students or children. But you may not be aware of the benefits inclusion offers to all children - and to yourself and society. Inclusion is not dumping children with disabilities into regular classrooms.”

Peggy wrote: “I could write a book on WHY inclusion is the right thing and I have not always felt that way myself, but when you really look at the whole situation, INCLUSION is the only thing that makes sense.”

April concluded: Unlike you, I do not see inclusion as more costly. I see inclusion as the public school’s latest bandwagon to justify them not providing appropriate services to my child.”

Sue was prophetic as evidenced by the preceding comments when she said: The disability community is not united on all fronts, especially when it comes to educating children with disabilities. There are opinions that range from separate schools to fully inclusive classrooms.

Respond to info@rcomo.org

Inclusion, The Death Knell To Public Education?

Mainstreaming didn’t work. Theorists and other well-meaning professionals have now introduced a new ideology - Inclusion - into our educational psyche. Students who have special needs are being admitted into regular classrooms at an alarming rate. Just because federal law requires that all students be educated in the “least restrictive environment,” should that litmus test be applied literally?

Mentally Retarded Citizens of Missouri believes that parents know their children’s needs best and should have a voice in their education. However, inappropriate educational placements in the name of legal “rights” promotes regression of a child with mental retardation and disrupts the rest of the class.

Children should be placed in educational settings appropriate to their needs!

Theory driven programs are folly. In the case of children with disabilities they can and do have disastrous consequences. Inclusion is not the best choice for all children. 

It’s time to introduce appropriate, common sensed placements and solutions into the educational processes. A rising tide should raise all boats! Otherwise, parents of “normal” children will rightfully rise up in what could be the final death-knell to public education.

Whatever happened to the “right” of normal children to receive and appropriate education?

Criminal Justice

Ladies and Gentlemen,

My name is Howard Boyd, I am the Chief of Police of the City of Cape Girardeau. I appreciate your interest in the welfare of our citizens by holding these hearings. I am not here to discuss philosophy, I have no political agenda, and have little knowledge concerning the policies of the various state agencies.

I am a life long native of the city of Cape Girardeau and have been associated with the police department since 1966. That experience, in addition to serving as the Chief of police for the past five and a half years, I can state that there is not much that has happened in the city of Cape Girardeau in the last quarter century that has escaped my attention. I am here today to discuss with you something that has caught my attention and it deals with mentally handicapped persons housed in independent living facilities in the city of Cape Girardeau. I am somewhat familiar with the independent living structure since there is one directly across the street from my office that I have a constant view of for eight hours a day.

The independent living facility across the street from my office is a twelve unit apartment that has three times the number of calls for service from the police department as the nearest twelve unit apartment that rents to the general public. I have taken it on as a personal goal to keep an eye on the apartments across the street because of the fact there is no supervisor on the premises. I am personally acquainted with almost all of the dwellers and it is my personal opinion that one of the dwellers has absolutely no business living in an unsupervised complex. He is constantly being badgered and picked on by acquaintances and constantly shows up at the front desk of the police building to make complaints of peace disturbance. It is again my opinion that he can be easily manipulated and talked into doing illegal or harmful acts by almost anyone he comes in contact with.

Several tragic incidents involving residents of independent living structures have occurred within the city of Cape Girardeau over the past few years. Two of the most tragic involve an incident occurring in October of 1991 where the mentally retarded 45 year old female resident of an independent living facility was the victim of a brutal rape and sexual assault perpetrated by an individual she had come in contact with from the Sheltered

Workshop where she was employed. Last week, just over two years from this occurrence, and at the same address, two mentally retarded females were raped and sexually abused in their apartment again by a male they knew from their place of work. This incident resulted in five charges of rape being filed against a single individual. One of the victims did not come forward until another victim told the police her friend had also been attacked. 

Both cases were or will be adjudicated in a court of law but during the judicial experience they then again become the victim of a criminal justice system that allows the defendants attorney to momentarily take a leave of his conscience during the cross examination of the witnesses who are easily confused, in most cases have little recall of past events and make extremely poor witnesses on the stand.

In another independent living apartment complex, one of the mentally handicapped residents committed suicide within tow weeks of being moved from a supervised living facility.

Not only are we seeing an increase in victimization of mentally retarded living independently, but they are increasingly more often becoming engaged in criminal activity simply because they are easily led and manipulated by criminals who use them to break into building, shop lift items for them for conversion for cash.

My job is to apprehend criminals as well as to reduce criminal activity in the city. It is my laymen’s opinion that many of the mentally ill citizens assigned independent living status have no business living outside of some structured environment where at least a minimal supervision is given to their activities and controls who comes and goes in the independent living complexes.

We are indeed fortunate that we have not investigated a homicide in an independent living facility, but I fear that will occur because the residents generally do not have the attribute of fear and are very vulnerable to outside influences.

There is a thumb rule in law enforcement that only ten percent of the crimes occurring in a particular jurisdiction are reported to the police. In the case of the mentally handicapped living in unsupervised facilities I am sure that the rate of crimes occurring against them being reported to the police is much lower.

I feel a return to the policy of supervised living and being allowed to work in a highly supervised environment would better serve society.

Thank you for your time.