Trigger warning: This article contains descriptions of treatment programs for children with neurodevelopmental delays that may be upsetting to some readers.

Today, most informed parents and professionals no longer believe untruths like this: “Children who do not exhibit any signs of good cognitive ability are very unlikely indeed to develop skills through any method of teaching.” – Citation Withheld

Not long ago, many children with neurodevelopmental delays were routinely placed from a very young age in large institutions with reassuring names like “Home and Training School.”

During my eight-month doctoral research internship at a Home and Training School, there was little or no education or training of children with significant neurodevelopmental delays.

Standardized testing was done for all new residents to determine which level of care the child should receive and to determine their placement and possible programs. Many of the children were considered “untestable” because they could not perform tasks on standardized instruments.

Most of the assessments that were given involved standardized IQ evaluations. The four levels of “retardation” were based on IQ test scores: “mild mental retardation (IQ between 50-55 and 70), moderate mental retardation (IQ between 35-40 and 50-55), severe mental retardation (IQ between 20-25 and 35-40), and profound mental retardation (IQ below 20 or 25).

IQ scores determined the child’s potential learning capabilities, and children were classified as educable, 50–75; trainable, 25–50; and custodial, 0–25.” Classification and categorization are usually considered important priorities for most bureaucracies.

IQ was, and typically still is, considered by statistical analysis to be valid and reliable and generally stable throughout the person’s lifetime. I have issues with those assumptions, which I plan to discuss in future posts.

As a result of the testing, each child was classified as “educable,” “trainable,” or “custodial care.” The “educable” child received some extremely watered-down academic instruction, usually involving memorizing colors, shapes, letters, numbers and Christmas Carols. Those deemed “trainable” were supposed to receive some sort of “self-help” training, which was minimal and not highly effective. The self-help priorities usually involved learning institutional rules and schedules, obedience training and following instructions.

In this and most other large institutions for neurodivergent children and adults, low-functioning residents were housed, fed, clothed, medicated, sat most of the day and evening doing nothing, usually engaging in repetitive rocking, groaning, and self-stimulating behaviors, and were hospitalized if necessary and did little more.

Even the most capable were not allowed to do any cooking, not allowed to make their beds, not allowed to sweep or clean their room, to do their laundry or do supervision or caregiving for other children. There were no organized or spontaneous play groups because there were very few children who knew how to play.

The State’s legal advisors said that many self-help activities were “forced labor.” They were to be done exclusively by insured caregivers employed by the institution. Routine tasks done in people’s homes were considered “work” in institutions. Since the children were not being paid for “work” it was considered exploitation. Even though the caregivers were overworked and they were seldom able to catch up and complete their work, they were against having the children do the things they, the workers, were hired to do. It was the employees’ job.

Many of the employees said it was easier to do it themselves than to try to train and supervise the children. None of the caregivers I spoke with believed that the children in their care could learn to play or to do self-care or other activities of daily living or would even want to. Others felt it was insulting to them (the caregivers and custodial workers) to have “retarded kids” doing the same work that they were hired to do.

I was given a legal document, much like the one below, by institution administrators and lawyers when I tried to initiate a “self-help training program” for child residents that would give them opportunities to build personal relationships with mentors, learn how to learn, learn and practice practical life-skills, have purpose and responsibilities, develop self-confidence and self-respect.

All children need to be involved in self-care training and activities involving exercise, food preparation, self-dressing, cleaning personal area, social engagement, social play and group activities, self-entertainment, learning, empathy and helping others, personal advancement and enjoyment, etc. But these were not made available or even allowed. They were considered exploitative, non-voluntary labor. In the medical model, patients in a hospital are not expected or allowed to clean their rooms or cook their meals.

“1. Violation of Child Labor Laws

• Federal and state child labor laws in many countries, including the U.S., prohibit the employment of children in exploitative or non-voluntary labor, especially in environments where they are under custodial care.
• Children with developmental disabilities are especially vulnerable and may not be able to understand or consent to the work they are asked to do.

“2. Exploitation and Lack of Consent

• Forcing children to work in institutions where they live can easily cross the line into involuntary servitude, which is prohibited by the 13th Amendment of the U.S. Constitution (except as punishment for a crime).
• These children are in a custodial relationship and lack the ability to freely choose whether to work or not. If work is required without proper compensation, protections, and consent, it is exploitative.

“3. Violation of Disability Rights

• Under laws like the Americans with Disabilities Act (ADA) and Individuals with Disabilities Education Act (IDEA), children with disabilities are entitled to protections, services, and education, not forced labor.
• Forcing institutionalized children with developmental disabilities to work undermines their right to appropriate education and treatment.

“4. Breach of Ethical Standards in Care Institutions

• Institutions are ethically and legally required to prioritize the well-being, development, and rehabilitation of children under their care.
• Requiring work from residents, especially without clear therapeutic or educational benefit and proper safeguards, is a breach of professional standards and often licensing regulations.

“Summary

“Requiring institutionalized children with developmental disabilities to work is illegal because it constitutes child labor, exploitation, and discrimination, and it violates constitutional, federal, and ethical protections designed to safeguard vulnerable populations.

Many routine self-help activities were considered the responsibility of the paid staff because the children did not have the skills or because it was considered “work” or “punishment,” or it would replace paid staff duties, or it could benefit the institutions financially or operationally. Self-care activities for lower functioning children were not considered to be related to educational or therapeutic goals.

It was the responsibility of the paid staff for:

Dressing and Undressing

               Lower functioning children were not allowed to:

Be unsupervised during dressing or undressing (done quickly and efficiently by the staff)

To choose appropriate clothing to wear for the day

To fold or organize their personal clothing

To help dress others (more impaired residents)

Feeding and Mealtime Responsibilities

Lower functioning children were not allowed to:

Prepare their own meals or snacks

Set or clear the eating tables for self or others

Serve food for self or others

Clean up after eating

Wash dishes or utensils

Room and Living Space Maintenance

Lower functioning children were not allowed to:

Make their own bed

Sweep or mop their own room

Organize their dresser drawers or personal items

Participate in group chores (e.g., cleaning common areas)

Laundry

Lower functioning children were not allowed to:

Sort their own laundry

Wash or dry their clothes (manually or with machines)

Fold and organize clothes

Help with others’ laundry

Environmental or Institutional Tasks

Lower functioning children were not allowed to:

Tend to lawns, water lawns and plants, rake leaves

Shovel snow

Have pets or take care of animals

Assist in “kitchen duty” for the entire ward

Collect trash or take out the garbage

Dust, cleaning furniture, organizing toys and personal effects

Lower functioning institutionalized children were robbed of learning life skills, of feeling purposeful, of dignity and self-worth. It was not much better for even the highest functioning institutionalized children.

Family visits to the institution were discouraged. Children seldom, if ever, left the institution or visited their homes. They lived in their rooms in small or large groups, or when the institution was overcrowded, slept in beds in the hallways.

Only a few bothered to even occasionally look out of the windows of the institution. In over a year, the low-functioning children that I studied and worked with for my doctoral research were not allowed to go outside the building unless a family member would take them for a walk on the grounds. Family visits were very rare. Some received visits on holidays or birthdays.

Most children were in very bad physical, medical and mental condition due to their underlying conditions and due to their institutionalization.

The trainable and the custodial child was placed for life and would probably never live outside of the institution. They would never be taught speech or communication, or even fine or gross motor skills, or even how to play or exercise.  

There were surprisingly few toys, a few dolls or plastic figures that were seldom touched. They never learned how to play with toys. I never saw them playing with each other. No staff members arranged or supervised or taught or participated in play activities with the children.

The children were seldom held or touched except when dressed by the staff, or given showers, or during toileting. Many remained in diapers well beyond their chronological ages. There were no programs to teach toileting, only occasional instructions and insults. “Sit down, stay there. Don’t get up until you finish. Don’t be stupid.”

Self-help skills were rarely taught, and only to the top tier of residents. For most children the staff were too busy dispensing medication (usually sedatives and antibiotics), cooking and placing food on trays to be taken to the children’s tables by staff members, cleaning up the lunchroom and kitchen afterward, dressing and undressing the children, cleaning the floors and the soiled beds and toilets, transporting the children to and from the eating areas or hospital areas, doing the laundry and trying to keep children from hurting each other or themselves. No supervision of children was given during the meals to see whether the children had eaten their meals or part of their meals.

Children who were too active or posed some risks to others or to themselves were routinely tied to their chairs during the day and tied to their beds at night. Some were made to wear straitjackets and other restraints. Children with seizures and narcolepsy or balance problems wore ill-fitting oversized adult boxing helmets all day long until bedtime, and sometimes while they slept. The helmets constantly slipped down over the child’s face and covered the child’s eyes so the child would try to hold their helmets up higher so they could see.  

The institution was based on the medical model of the time. The directors of the institution were physicians, not educators or therapists. The staff that cared for the children were primarily very low-paid institutional aids and orderlies, like those working in hospitals and nursing homes, with little or no training or credentials. The institution was far more like a government mental hospital for the indigent than a “home” or “training school.” But most of the staff felt they were caring for the children the best way they knew.

Most children, at any IQ level, received little or no independence training. Their survival needs were minimally provided for. No one checked if they had eaten part or any of their meals. Most children could not feed themselves with utensils. They ate with their hands or put their faces directly into their plates and bowls or ate off the floor where they had thrown their food and drinks.

Sanitation was so poor there were repeated institution-wide shigella epidemics. Shigellosis is a highly contagious infectious bacillary dysentery characterized by severe diarrhea, often containing blood, together with abdominal cramps and fever. The smell throughout the institution was terrible.

The institution was horribly understaffed and underfunded. The first line workers were untrained caregivers with little or no supervision. Most children remained in their bedclothes day and night. There was no music, no television, no nurturing. The basic priorities were food, shelter and protection from danger. Meaningful activities, learning, choices, and decision-making were not possible.  The residential staff would take care of what they thought the child needed to survive. And even those basics were only provided if the overburdened staff had the time, strength or inclination.

Hygiene was terrible. Infectious disease was ever-present. Children were taken to a nurse if they were terribly sick and taken to a psychologist if they had behavior problems. That is if they repeatedly ate other children’s food, slept in another child’s bed, smeared or ate feces, played with the contents in the toilet bowls, ate dirt, garbage, toilet paper or clothing, masturbated, repeatedly screamed at night, hit, scratched, or bit themselves or other children or staff, or were overly self-abusive to the point of causing themselves permanent injury.

The main treatment for seizures was phenobarbital with its difficult side effects, and sedatives and tranquilizers when the children hit themselves in the head or face, or repeatedly banged their heads on the walls, windows or bedposts, and ill-fitting boxing helmets that continually slipped down over their faces or would fall off entirely. If they were caught masturbating, they were dressed in two pairs of socks over each hand and wore two pairs of underwear safety-pinned together, at night when they went to bed, and often during the day.

There was no need to try to teach low-functioning children to speak, or to read or to write. When I asked why there was no speech therapy I was told “they were not intelligent enough to speak and even if they could, they had nothing to say anyway.” “No possibility of them ever being able to read or write, so it was useless to even try to teach them.”

At a private institution, I asked the director if we could design and implement an educational program to teach the children how to write, at least their names in the beginning. He smiled and said, “Why should they learn to write? They don’t sign the checks. Their parents do.” The institution had no interest in educational programs, no expectations of progress or development or a meaningful life outside of the institution. I often heard, “Anyway, many of them are over 18. Their time for learning has passed.” “They are here for life. We take care of what they need.”

Back to the “Home and Training School” during my doctoral research.

Stress reactions and non-compliance were “treated” by ‘time-out’ (being confined to their room, to their bed or crib, or by being tied to their chair), strait jackets, medications (sedatives, tranquilizers and sleeping pills).

A nine-year-old little girl habitually tried to dig her eyes out of their sockets with her fingers. When the standard treatments did not work, she was put on a 24-hour watch through a one-way observation mirror in her room. Every time she put her hands up to her face, even when she was sleeping, someone would run in and give her electric shocks with a cattle prod.

One day, a psychologist working at the institution snuck up on me and zapped me in the side with the same electric cattle prod. I jumped in the air, screamed a curse at him and had to be held back so I would not attack him. He explained that the electric shock was given to anyone who might be asked to use the electric cattle prod on a child, so they “would know how much it hurts and not over-use it in the treatment process.” Even a one-time shock hurt like hell, and this little girl received 20-40 shocks in a 24-hour period, day and night, for three or four consecutive days.

From time to time, psychologists instructed the staff to try to give food rewards for good behavior rather than punishments for bad behavior. But there was no follow-up to see if the new methods were being used. One of the children had been branded with a key that was heated on a stove by a sadistic orderly who was fired from the institution when his crimes were brought to light.

The institution was located outside of the city limits, separated from the real world. Children were never taken to stores, to recreation centers, for outings or hikes, for rides on horses, wagons, buses, boats, trains or planes. None knew how to ride a tricycle or bicycle.

Parent and family visits were infrequent. It took too long to prepare the facilities for the parent visits. It took too long to dress and prepare the child and clean and decorate the rooms and hallways. Anyway, the caregivers felt that most parents had too little interest, or had too many requests, or had too many complaints.

Home visits for the children were discouraged. The reasons given were that “parents did not follow the institution’s rules for the children when they visited their familial homes. Children became “spoiled” at home, went off of their schedules, or did not want to come back. The children were too excited to go to their homes and too upset when they returned.” Keeping the children calm, quiet and compliant was a major priority for the institution.

Parents were allowed to visit on Sundays between 1:00 and 5:00. But only a small fraction of the parents, siblings or other family members ever came. Some would come on Christmas or the child’s birthday. Some parents came once every few weeks or few months. Some children never received a visit from a parent or family member.

The “Home and Training School” was for life.

Today, there is a different generation of neurodivergent children and of parents.

Far fewer children with developmental delays are placed in full-time residential centers. Most live at home at least until they are no longer entitled to educational school programs. Some young adults and some older adults remain at home with parents and siblings throughout their lifetimes. More often, young adults with neurodevelopmental disabilities find placements in small group home facilities. Living with 3-15 other young adults. But parents remain more connected and more involved than in the past.  

In 1980, the average American father spent 2½ hours a week with their neurotypical children. In 2014, fathers spent over 10 hours per week with their typically developing children.

On the rare occasion in the 1980s that you saw a child in the park with their father, their child would probably be carrying a ball, and the father would be carrying a newspaper or a book. Dads would sit on a park bench, throw the ball onto the grass, and tell the child to “go play with the ball.” Fathers would open their newspaper and read it for the next 20 minutes while the boy would stand next to the ball, looking around, waiting for something to happen.

At birthday parties, mothers would prepare and then serve some food, then find other mothers and spend the hour speaking to them while their children ate, opened presents, and awkwardly walked around or ran around the rooms. Parents and children were often separated from each other and rarely played together. Parents rarely designed and supervised collaborative play activities between children.

Today in the park, we actually see mothers and fathers speaking with the child, kicking the ball with their child, teaching the child how to pass or dribble a ball, having a pretend tea party, or having a picnic on the grass with their child, or reading a story with their child. Sometimes parents invite one or two of their child’s friends to come with the child to the park.

Today, parents typically want to be more involved with their children. Parents are more interested in learning about their child’s difficulties and hidden strengths. Today, informed parents are no longer content to place the responsibility for their child’s welfare and development entirely in the hands of experts and institutions.

Today, fathers of children with disabilities often increase involvement in response to caregiving demands, though this varies according to family dynamics and values, socioeconomic conditions, and other available support systems.

Some research suggests that time spent by parents of children with disabilities can be higher than those of non-disabled children but not necessarily in play or communication or learning or therapeutic activities, but in medical care, appointments, and supervision and emotional support.

Today, many parents and much of the greater society realize that children need and deserve, and have the right to, far more than merely their supervision and survival needs. Many parents are actively involved in discovering their child’s interests, intentions, needs and real potential. Parents are interested in finding the best ways to communicate with their children, to motivate them, and to form a more personal two-way relationship with their children. They actively search for ways to help their child learn and to progress so their child can live a more purposeful and more fulfilling life.

Many parents want to learn better ways to have fun with their children and to help motivate and support their child’s interests, exploration, ideas, feelings, sharing and learning. Parents want to be more involved in setting goals, establishing priorities, planning strategies and in evaluating progress.

Today, many parents want to be involved, want to learn, and want to help their child to progress. Parents maintain cooperative links between the child’s home, their school, their treatments and their enrichment activities.

Today, a growing number of professionals recognize and respect the parents’ expertise regarding their children, the parents’ deeper, personal insights and understanding of their child with disabilities, and appreciate the parents’ dedication to overcoming many obstacles, frustrations, and disappointments. Parents are determined to find ways to maintain relationships and involvement with their children even when there is not enough time, not enough money, not enough progress, not enough strength.

Parents worry about their children’s current functioning and well-being and have concerns regarding their child’s future development.

When children are placed in situations where they perceive they have little control, children usually react with fear and confusion. Adults react in the same way as the child when they feel the needs of the child and of the family are blocked, when they are not offered effective programs, when they do not receive dedicated, experienced, talented support or practical solutions.

Today, there is a different generation of parents. Far more involved, far more knowledgeable, far more hopeful. Since the child’s parents and family are the most important people in their child’s life, their child with developmental delays has a much better chance to connect, to learn, to advance.

Today, in more enlightened countries, children with developmental delays have a future. Children at all skill levels are given the nurturing, the opportunities and the mediated instruction they need to live more connected, healthier, freer, safer, more skillful, more self-reliant, productive, responsible and more fulfilling lives.

Life is better for today’s more informed, more hopeful, more active and involved parents and certainly far better for their children. As my advanced-thinking immigrant father used to say about himself as a lesson for me, “Can always be better. I learn from everybody. I try again, harder and harder, until I get it. Never give up.”

Copyright © 2025 Shlomo Chaim

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