Mental retardation disability
Intellectual Disability in Children: Causes, Symptoms, and Treatments
Written by Florence Byrd
In this Article
- What is intellectual disability?
- What are the signs of intellectual disability in children?
- What causes intellectual disability?
- Can intellectual disability be prevented?
- How is intellectual disability diagnosed?
- What services are available for people with intellectual disability?
- What can I do to help my intellectually disabled child?
Intellectual disability (ID), once called mental retardation, is characterized by below-average intelligence or mental ability and a lack of skills necessary for day-to-day living. People with intellectual disabilities can and do learn new skills, but they learn them more slowly. There are varying degrees of intellectual disability, from mild to profound. The term "mental retardation" is no longer used, as it's offensive and has a negative tone.
What is intellectual disability?
Someone with intellectual disability has limitations in two areas. These areas are:
- Intellectual functioning. Also known as IQ, this refers to a person’s ability to learn, reason, make decisions, and solve problems.
- Adaptive behaviors. These are skills necessary for day-to-day life, such as being able to communicate effectively, interact with others, and take care of oneself.
IQ (intelligence quotient) is measured by an IQ test. The average IQ is 100, with the majority of people scoring between 85 and 115. A person is considered intellectually disabled if they have an IQ of less than 70 to 75.
To measure a child’s adaptive behaviors, a specialist will observe the child’s skills and compare them to other children of the same age. Things that may be observed include how well the child can feed or dress themselves; how well the child is able to communicate with and understand others; and how the child interacts with family, friends, and other children of the same age.
Intellectual disability is thought to affect about 1% of the population. Of those affected, 85% have mild intellectual disability. This means they are just a little slower than average to learn new information or skills. With the right support, most will be able to live independently as adults.
What are the signs of intellectual disability in children?
There are many different signs of intellectual disability in children. Signs may appear during infancy, or they may not be noticeable until a child reaches school age. It often depends on the severity of the disability. Some of the most common signs of intellectual disability are:
- Rolling over, sitting up, crawling, or walking late
- Talking late or having trouble talking
- Slow to master things like potty training, dressing, and feeding themselves
- Difficulty remembering things
- Inability to connect actions with consequences
- Behavior problems such as explosive tantrums
- Difficulty with problem-solving or logical thinking
In children with severe or profound intellectual disabilities, there may be other health problems as well.
These problems may include seizures, mood disorders (anxiety, autism, etc.), motor skills impairment, vision problems, or hearing problems.
What causes intellectual disability?
Anytime something interferes with normal brain development, intellectual disability can result. However, a specific cause for intellectual disability can only be pinpointed about a third of the time.
The most common causes of intellectual disability are:
- Genetic conditions. These include things like Down syndrome and fragile X syndrome.
- Problems during pregnancy. Things that can interfere with fetal brain development include alcohol or drug use, malnutrition, certain infections, or preeclampsia.
- Problems during childbirth. Intellectual disability may result if a baby is deprived of oxygen during childbirth or is born extremely premature.
- Illness or injury.
Infections like meningitis, whooping cough, or the measles can lead to intellectual disability. Severe head injury, near-drowning, extreme malnutrition, infections in the brain, exposure to toxic substances such as lead, and severe neglect or abuse can also cause it. - None of the above. In two-thirds of all children who have intellectual disabilities, the cause is unknown.
Can intellectual disability be prevented?
Certain causes of intellectual disability are preventable. The most common of these is fetal alcohol syndrome. Pregnant women shouldn’t drink alcohol. Getting proper prenatal care, taking a prenatal vitamin, and getting vaccinated against certain infectious diseases can also lower the risk that your child will be born with intellectual disabilities.
In families with a history of genetic disorders, genetic testing may be recommended before conception.
Certain tests, such as ultrasound and amniocentesis, can also be performed during pregnancy to look for problems associated with intellectual disability.
Although these tests may identify problems before birth, they cannot correct them.
How is intellectual disability diagnosed?
Intellectual disability may be suspected for many different reasons. If a baby has physical abnormalities that suggest a genetic or metabolic disorder, a variety of tests may be done to confirm the diagnosis. These include blood tests, urine tests, imaging tests to look for structural problems in the brain, or electroencephalogram (EEG) to look for evidence of seizures.
In children with developmental delays, the doctor will perform tests to rule out other problems, including hearing problems and certain neurological disorders. If no other cause can be found for the delays, the child will be referred for formal testing.
Three things factor into the diagnosis of intellectual disability: interviews with the parents, observation of the child, and testing of intelligence and adaptive behaviors. A child is considered intellectually disabled if they have deficits in both IQ and adaptive behaviors.
If only one or the other is present, the child is not considered intellectually disabled.
After a diagnosis of intellectual disability is made, a team of professionals will assess the child’s particular strengths and weaknesses. This helps them determine how much and what kind of support the child will need to succeed at home, in school, and in the community.
What services are available for people with intellectual disability?
For babies and toddlers, early intervention programs are available. A team of professionals works with parents to write an Individualized Family Service Plan, or IFSP. This document outlines the child’s specific needs and what services will help the child thrive. Early intervention may include speech therapy, occupational therapy, physical therapy, family counseling, training with special assistive devices, or nutrition services.
School-age children with intellectual disabilities (including preschoolers) are eligible for special education for free through the public school system.
This is mandated by the Individuals With Disabilities Education Act (IDEA). Parents and educators work together to create an Individualized Education Program, or IEP, which outlines the child’s needs and the services the child will receive at school. The point of special education is to make adaptations, accommodations, and modifications that allow a child with an intellectual disability to succeed in the classroom.
What can I do to help my intellectually disabled child?
Steps to help your intellectually disabled child include:
- Learn everything you can about intellectual disabilities. The more you know, the better advocate you can be for your child.
- Encourage your child’s independence. Let your child try new things and encourage your child to do things by themselves. Provide guidance when it’s needed and give positive feedback when your child does something well or masters something new.
- Get your child involved in group activities. Taking an art class or participating in Scouts will help your child build social skills.
- Stay involved. By keeping in touch with your child’s teachers, you’ll be able to follow their progress and reinforce what your child is learning at school through practice at home.
- Get to know other parents of intellectually disabled children. They can be a great source of advice and emotional support.
Intellectual Disability in Children: Causes, Symptoms, and Treatments
Written by Florence Byrd
In this Article
- What is intellectual disability?
- What are the signs of intellectual disability in children?
- What causes intellectual disability?
- Can intellectual disability be prevented?
- How is intellectual disability diagnosed?
- What services are available for people with intellectual disability?
- What can I do to help my intellectually disabled child?
Intellectual disability (ID), once called mental retardation, is characterized by below-average intelligence or mental ability and a lack of skills necessary for day-to-day living.
People with intellectual disabilities can and do learn new skills, but they learn them more slowly. There are varying degrees of intellectual disability, from mild to profound. The term "mental retardation" is no longer used, as it's offensive and has a negative tone.
What is intellectual disability?
Someone with intellectual disability has limitations in two areas. These areas are:
- Intellectual functioning. Also known as IQ, this refers to a person’s ability to learn, reason, make decisions, and solve problems.
- Adaptive behaviors. These are skills necessary for day-to-day life, such as being able to communicate effectively, interact with others, and take care of oneself.
IQ (intelligence quotient) is measured by an IQ test. The average IQ is 100, with the majority of people scoring between 85 and 115. A person is considered intellectually disabled if they have an IQ of less than 70 to 75.
To measure a child’s adaptive behaviors, a specialist will observe the child’s skills and compare them to other children of the same age.
Things that may be observed include how well the child can feed or dress themselves; how well the child is able to communicate with and understand others; and how the child interacts with family, friends, and other children of the same age.
Intellectual disability is thought to affect about 1% of the population. Of those affected, 85% have mild intellectual disability. This means they are just a little slower than average to learn new information or skills. With the right support, most will be able to live independently as adults.
What are the signs of intellectual disability in children?
There are many different signs of intellectual disability in children. Signs may appear during infancy, or they may not be noticeable until a child reaches school age. It often depends on the severity of the disability. Some of the most common signs of intellectual disability are:
- Rolling over, sitting up, crawling, or walking late
- Talking late or having trouble talking
- Slow to master things like potty training, dressing, and feeding themselves
- Difficulty remembering things
- Inability to connect actions with consequences
- Behavior problems such as explosive tantrums
- Difficulty with problem-solving or logical thinking
In children with severe or profound intellectual disabilities, there may be other health problems as well.
These problems may include seizures, mood disorders (anxiety, autism, etc.), motor skills impairment, vision problems, or hearing problems.
What causes intellectual disability?
Anytime something interferes with normal brain development, intellectual disability can result. However, a specific cause for intellectual disability can only be pinpointed about a third of the time.
The most common causes of intellectual disability are:
- Genetic conditions. These include things like Down syndrome and fragile X syndrome.
- Problems during pregnancy. Things that can interfere with fetal brain development include alcohol or drug use, malnutrition, certain infections, or preeclampsia.
- Problems during childbirth. Intellectual disability may result if a baby is deprived of oxygen during childbirth or is born extremely premature.
- Illness or injury.
Infections like meningitis, whooping cough, or the measles can lead to intellectual disability. Severe head injury, near-drowning, extreme malnutrition, infections in the brain, exposure to toxic substances such as lead, and severe neglect or abuse can also cause it. - None of the above. In two-thirds of all children who have intellectual disabilities, the cause is unknown.
Can intellectual disability be prevented?
Certain causes of intellectual disability are preventable. The most common of these is fetal alcohol syndrome. Pregnant women shouldn’t drink alcohol. Getting proper prenatal care, taking a prenatal vitamin, and getting vaccinated against certain infectious diseases can also lower the risk that your child will be born with intellectual disabilities.
In families with a history of genetic disorders, genetic testing may be recommended before conception.
Certain tests, such as ultrasound and amniocentesis, can also be performed during pregnancy to look for problems associated with intellectual disability.
Although these tests may identify problems before birth, they cannot correct them.
How is intellectual disability diagnosed?
Intellectual disability may be suspected for many different reasons. If a baby has physical abnormalities that suggest a genetic or metabolic disorder, a variety of tests may be done to confirm the diagnosis. These include blood tests, urine tests, imaging tests to look for structural problems in the brain, or electroencephalogram (EEG) to look for evidence of seizures.
In children with developmental delays, the doctor will perform tests to rule out other problems, including hearing problems and certain neurological disorders. If no other cause can be found for the delays, the child will be referred for formal testing.
Three things factor into the diagnosis of intellectual disability: interviews with the parents, observation of the child, and testing of intelligence and adaptive behaviors. A child is considered intellectually disabled if they have deficits in both IQ and adaptive behaviors.
If only one or the other is present, the child is not considered intellectually disabled.
After a diagnosis of intellectual disability is made, a team of professionals will assess the child’s particular strengths and weaknesses. This helps them determine how much and what kind of support the child will need to succeed at home, in school, and in the community.
What services are available for people with intellectual disability?
For babies and toddlers, early intervention programs are available. A team of professionals works with parents to write an Individualized Family Service Plan, or IFSP. This document outlines the child’s specific needs and what services will help the child thrive. Early intervention may include speech therapy, occupational therapy, physical therapy, family counseling, training with special assistive devices, or nutrition services.
School-age children with intellectual disabilities (including preschoolers) are eligible for special education for free through the public school system.
This is mandated by the Individuals With Disabilities Education Act (IDEA). Parents and educators work together to create an Individualized Education Program, or IEP, which outlines the child’s needs and the services the child will receive at school. The point of special education is to make adaptations, accommodations, and modifications that allow a child with an intellectual disability to succeed in the classroom.
What can I do to help my intellectually disabled child?
Steps to help your intellectually disabled child include:
- Learn everything you can about intellectual disabilities. The more you know, the better advocate you can be for your child.
- Encourage your child’s independence. Let your child try new things and encourage your child to do things by themselves. Provide guidance when it’s needed and give positive feedback when your child does something well or masters something new.
- Get your child involved in group activities. Taking an art class or participating in Scouts will help your child build social skills.
- Stay involved. By keeping in touch with your child’s teachers, you’ll be able to follow their progress and reinforce what your child is learning at school through practice at home.
- Get to know other parents of intellectually disabled children. They can be a great source of advice and emotional support.
The situation of people with mental and psychic development disorders in Russia
In the Constitution of the Russian Federation (Article 7) Russia declares itself a social state whose policy is aimed at creating conditions that ensure a decent life and free development of a person. It follows from this that persons with disabilities in the Russian Federation should receive state support. The Constitution also recognizes the right of every person to education, health care, and social services. All these provisions also apply to people with disabilities - in particular, people with mental and mental developmental disabilities.
The Law of the Russian Federation of July 10, 1992 "On Education" (Article 5) states that citizens of the Russian Federation are guaranteed the opportunity to receive education regardless of their health status and social status.
For children with disabilities, educational authorities create special (correctional) educational institutions (classes, groups) that provide them with treatment, education and training, social adaptation and integration into society.
Children with disabilities are sent to these educational institutions by education authorities only with the consent of their parents (legal representatives) on the conclusion of the psychological, medical and pedagogical commission. (Clause 10, Article 50 of the Law "On Education").
Special correctional schools for mentally retarded children with intact intellect, as well as schools for children with mental retardation, are also being created at the moment. Children are sent to these schools with the consent of their parents by the educational authorities on the conclusion of the medical-psychological-pedagogical commission.
However, there are a number of medical contraindications for admitting children to a special school.
According to Appendix 2 to the Order of the Health Committee of the Government of Moscow and the Moscow Committee of Education dated 19, October 21, 1998 N 574/579 "On the organization of the City Medical-Psychological-Pedagogical Commission for the recruitment of special (correctional) educational institutions for mentally retarded children" medical contraindications for admission to specialized (correctional) boarding schools (schools) are :
- severe forms of dementia;
- oligophrenia in the degree of pronounced imbecility;
- idiocy of various etiologies, including Down syndrome;
- organic dementia with severe maladjustment (lack of self-service skills).
If the above contraindications exist, the child cannot be admitted to a special school. The note to this document specifically notes that children suffering from these forms of dementia are sent to the appropriate institutions of the Committee for Social Protection of the Population
Recognizing the need to educate children with severe mental retardation, the Ministry of Education recommended creating special classes for them in schools for mentally retarded children.
This is indicated in the letter of the Ministry of Education of the Russian Federation dated September 4, 1997 N 48. In such classes, conditions are created for the socialization of children and their labor training for subsequent employment in the social protection system.
Most children with severe mental retardation are in orphanages, whose activities are regulated by outdated regulations that were adopted 20-30 years ago. According to the Regulations on the orphanage for mentally retarded children by the Ministry of Social Security of the RSFSR, approved by order of the Ministry of Social Security of the RSFSR of April 6, 1979 N 35, these institutions do not carry out educational activities.
The Ministry of Labor of the Russian Federation believes that abandoning the system of boarding schools is impossible (funds of the subprogram "Disabled Children" within the framework of the federal target program "Children of Russia" for 2003-2006, approved by the Decree of the Government of the Russian Federation of October 3, 2002 No.
732 are mainly used to improve conditions in boarding schools).
However, the Ministry of Labor still recognizes the need to reform this system. For example, on August 8, 2002, Decree No. 54 was adopted "On the Approval of Methodological Recommendations for the Organization of the Activities of the State (municipalities), which states that these institutions organize the education of disabled children, taking into account their physical capabilities and mental abilities in accordance with the law Russian Federation This Regulation also approved the approximate staffing of such institutions, which includes teaching staff.0003
Children with severe mental retardation who live with their families can be educated by their parents, and the state is obliged to compensate for their costs (“Education Law”, art. 40). However, in most cases, such compensation can only be obtained through the courts.
Federal Law No. 181-FZ of November 24, 1995 "On the Social Protection of Disabled Persons in the Russian Federation" provides for a mechanism for the rehabilitation of persons with disabilities through the development of an individual rehabilitation program that defines a set of rehabilitation measures, technical and other means of rehabilitation necessary for each individual disabled person (art.
11). The execution of the IPR is mandatory for all state bodies and organizations, regardless of the organizational and legal forms and forms of ownership. However, in practice, IPR, as a rule, does not include all the rehabilitation measures necessary for a particular disabled person.
The law also provides for the possibility for a disabled person or his/her legal representative to choose a provider of rehabilitation measures.
The individual rehabilitation program for a disabled person includes both rehabilitation activities provided to a disabled person free of charge in accordance with the federal basic program for the rehabilitation of disabled people, and rehabilitation activities paid for by the disabled person himself or by other persons or organizations, regardless of their legal forms and forms of ownership.
If a technical or other means or service provided for by an individual rehabilitation program cannot be provided to a disabled person, or if the disabled person has purchased the appropriate means or paid for the service at his own expense, then he is paid compensation in the amount of the cost of the technical or other means, services that must be provided to the disabled person .
The government has not yet adopted a federal basic rehabilitation program for the disabled. Because of this, it is now possible to receive compensation for the expenses of disabled people related to the implementation of IRP only through the courts.
As follows from Article 16 of the Law of the Russian Federation “On Psychiatric Care and Guarantees of the Rights of Citizens in its Provision”, the state guarantees social assistance and assistance in finding employment for persons suffering from mental disorders;
However, the state is practically unable to provide services for the social and vocational rehabilitation of disabled people with severe mental retardation. In Russia, there is no system of vocational rehabilitation and employment for this category of disabled people. Labor activity for them is possible only in institutions of the social protection system. Therefore, parents apply for such services to non-governmental organizations and are forced to pay for them on their own.
If a person with severe mental retardation lives in a family, after the death of his parents (in the absence of those who agree to support and serve his relatives), he is forcibly placed in a social service institution by court order
It is not allowed to place disabled children with physical disabilities in stationary institutions social services designed to accommodate children with mental disorders.
(Federal Law of August 2, 1995 g. N 122-FZ "On social services for elderly citizens and the disabled"
People with mental or mental development disorders can be recognized as legally incompetent (see the Civil Code of the Russian Federation) in a judicial proceeding. After that, they no longer have the right to independently exercise their property rights.
It should be recognized that, despite the existence of a legislative framework in the field of protecting the rights of people with disabilities, people with serious mental disorders in the Russian Federation are one of the least protected social categories.
Even existing laws in practice in most cases are not implemented. Representatives of state organizations act on the basis of by-laws or on their own arbitrariness, on the other hand, many positive by-laws are advisory in nature and are not subject to mandatory execution.
Thus, people with mental disabilities who are not able to defend their rights on their own are in most cases deprived of the opportunity to study and work and find themselves in severe isolation from society.
In 2007 alone, 13 boarding houses for mentally retarded children were commissioned.
Disability is now established indefinitely and in absentia
Since March 29, 2018, the Rules for establishing disability have changed in Russia.
We are sorting out the intricacies of the new document together with the head of the main bureau of medical and social expertise for the Arkhangelsk region and the NAO of the Ministry of Labor of Russia, Lyubov Kravtsova.
“The rules for recognizing a person as disabled is a document that has existed for a long time,” says Lyubov Kravtsova.
- In our work, we constantly relied on it, but periodically questions arose - the conditions for establishing permanent disability, absentee examination or establishing disability for children for a longer period were not clearly spelled out.
- But indefinitely disability with "irreversible changes and futility of rehabilitation measures" was established before?
Yes. But the problem is that each specialist of the medical organization and medical and social expertise (ITU) assessed this "futility" differently. Someone thought that, indeed, there were no prospects. And someone said that perhaps there will be new methods of treatment that still need to be tried. This uncertainty was especially painful for the parents of children with disabilities. They had to be re-examined every year. There were cases when a child received, for example, a course of treatment in a rehabilitation center, and his disability ended. And the parents had to interrupt the rehabilitation in order to fill out the documents for the extension.
– And they experienced extra stress.
– Absolutely. Now the possibility of determining the period of disability at the discretion of the ITU specialist is excluded, since there are clear criteria and a list of diseases, defects, irreversible changes that give rise to the establishment of disability. For example, malignant neoplasms, dementia. With profound mental retardation, disability is now established indefinitely.
These are also diseases of the nervous system with a progressive course, severe forms of inflammatory bowel diseases, including Crohn's disease. The list also includes scoliosis of the third and fourth degrees, cerebral palsy, all chromosomal abnormalities, including Down syndrome, blindness, deafness - not only hearing loss of the fourth, but also of the third degree is indicated. And the category of "disabled child" is now set not for one or two years, but also for five years, up to the age of 14 and up to 18 years.
– About Down syndrome.
Many parents complained that disability was not established at birth. Although the fact that the baby has a syndrome was immediately clear. But I had to wait three or four years.
- Indeed, there is such a feature that up to three years, a child with Down syndrome, just like any other baby, does not have skills, speech is not very developed. And it was believed that only after three years the degree of severity of developmental disorders is visible. But now disability can also be established during the initial examination, if there is a diagnosis.
– Since birth?
Yes. But the problem is that the diagnosis itself is not always established. For example, with Down syndrome, changes in the circulatory system, mental retardation may come first, and it is this diagnosis that is established for the child. The fact that there have been changes at the legislative level should be known not only by the doctors of the ITU bureau, but also by the doctors of medical organizations and the parents themselves.
– Does autism also qualify for a disability?
– With autism, disability began to be established from August 2017. But the diagnosis is not yet included in the indefinite list - there must be pronounced and persistent changes. Therefore, the child is under observation and, as a rule, by school age, the degree of complexity of the diagnosis is already clear.
The peculiarity of autism is that it proceeds in different ways. And for someone it can manifest as a developmental delay, and for someone it can be a genius.
- And if an adult has autism traits, but since no disability was established in Russia until 2017, then the person lives without a diagnosis - can he undergo an examination?
– Of course. But everything will depend on how this person is socialized. If he really needs support - he cannot find a job, ride public transport, and so on, then we will resolve the issue. But in my practice, there has not yet been a case where disability for autism was established after 18 years.
As a rule, these are children.
- Permanent disability is established for all forms of cerebral palsy?
- In cases of persistent severe impairments, disability under 18 years of age was established for children before, but now "lack of age and social skills" has been added to the list. That is, this is when a child cannot take care of himself, serve himself as it should be at his age.
- Many questions have always been raised by the need to confirm disability during amputation. Does a person with only one leg still have to be re-examined?
- If one limb is missing, the third disability group is established indefinitely. But those who undergo annual re-examination, as a rule, have the second group.
Why?
- The stump has not yet been formed, there is no possibility of prosthetics, as there are some diseases of the stump. Therefore, the disability of the second group is extended for some time.
Maybe so - the stump is formed, the disability is indefinite, but another disease has joined.
For example, heart disease. And with this disease, it is necessary to undergo an annual re-examination. And from the side it may seem that "ITU is waiting for the leg to grow." But, in fact, there is simply another serious disease that does not make it possible to establish disability indefinitely.
– Have the changes also affected the remote examination?
Yes. Previously, such an examination was also carried out by decision of the ITU Bureau. But in practice, it was not always possible to make a decision in absentia. It is now legally determined that an absentee examination is carried out if a person lives in a remote or hard-to-reach area. For example, across the river.
- So you don't have to take a sick grandmother on a boat to get a disability?
– No. It is necessary to fill out a referral to ITU. This can be done by a doctor or local paramedic. Disability will be established in absentia and in the case when the patient's condition is serious.
For example, the patient suffered a stroke, paralyzed. Or a person has stages 3 and 4 of oncology, he underwent severe surgical treatment - such a patient also does not need to be taken to the commission. Disability will be established on the basis of a referral to the ITU.
We hope that the changes will make life easier for people with disabilities and will help us as professionals - the burden on the ITU office will decrease. And we will be able to pay more attention to the rehabilitation component.
- Is the list of diseases that gives the right to establish permanent disability publicly available?
- The document has already been posted on the website of the ITU Federal Bureau. But I want to draw the attention of readers to one moment. The rules came into force very recently. Now is a transitional period, and we cannot exclude the "human factor" - there may be some "failures" in the bureau or in medical organizations on the ground. The point is that if somewhere and for someone a disability has not been established in accordance with the new rules, then it is necessary to appeal the decision to the main bureau of the ITU.
