Developmental disability
Encyclopedia
Developmental disability is a term used in the United States and Canada to describe lifelong disabilities
attributable to mental or physical impairments, manifested prior to age 18. It is not synonymous with "developmental delay" which is often a consequence of a temporary illness or trauma during childhood.
, learning
, mobility
, receptive and expressive language
, self-care
, and self-direction.
The term first appeared in U.S. law in 1970, when Congress used the term to describe the population of individuals who had historically been placed in state institutions, in its effort to improve conditions in these dehumanizing facilities (P.L. 91-517, "The Developmental Disabilities Services and Facilities Construction Act of 1970"). The law has since been amended many times, and now calls for the full community inclusion and self-determination of people with developmental disabilities (P.L. 106-402).
It is currently defined in United States Code
title 42, Chapter 144.
Frequently, people with mental retardation
, cerebral palsy
, autism spectrum disorders, various genetic and chromosomal disorders
such as Down syndrome
, Fragile X syndrome
, and Fetal Alcohol Spectrum Disorder
s are described as having developmental disabilities or delays. Generally, in the United States, special school supports (special education) are made available for many developmentally disabled children concurrent to the administration of intelligence quotient (IQ) scales or measures indicating a score of 70 or less. A score of 100 is average, with half of any population falling above and half below such an average individual.
Developmental disabilities are usually classified as severe, profound, moderate or mild, as assessed by the individual's need for supports, which may be lifelong. Generally, persons in the mild category may be able to live independently and participate in lifelong employment. Special vocational (sheltered workshops) and community socialization training are often required to attain such mastery. Moderate category persons will, most often, need varying levels of support from their families or from community agencies. The profound and severe category persons are more likely to have very high levels of dependence with many requiring intensive supports as their mastery of activities of daily living (ADLs) is generally quite limited or non-existent. Significant medical complications, such as epileptic seizures, swallowing difficulties, speech impairments, ambulation limitations, and a reduced life expectancy are more likely for persons in the profound impairment category.
Developmental disabilities affect between 1 and 2% of the population in most western countries, although many government sources acknowledge that statistics are flawed in this area. The worldwide proportion of people with developmental disabilities is believed to be approximately 1.4%. It is twice as common in males as in females, and some researchers have found that the prevalence of mild developmental disabilities is likely to be higher in areas of poverty and deprivation, and among people of certain ethnicities.
factors associated with developmental disabilities. For some specific syndromes and diagnoses, these are inherent (such as poor heart function in people with Down syndrome); however lack of access to health services and lack of understanding by medical professionals is also a major contributing factor. People with severe communication
difficulties find it difficult to articulate their health needs, and without adequate support and education might not recognize ill health
. Epilepsy
, sensory problems (such as poor vision
and hearing
), obesity
and poor dental health
are over-represented in this population. Life expectancy
among people with developmental disabilities as a group is estimated at 20 years below average, although this is improving with advancements in adaptive and medical technologies, and as people are leading healthier, more fulfilling lives, and some conditions (such as Freeman-Sheldon syndrome
) do not impact life expectancy.
issues, and psychiatric illnesses
, are more likely to occur in people with developmental disabilities than in the general population. A number of factors are attributed to the high incidence rate of dual diagnoses:
These problems are exacerbated by difficulties in diagnosis of mental health issues, and in appropriate treatment and medication, as for physical health issues.
is a significant issue for people with developmental disabilities, and as a group they are regarded as vulnerable
people in most jurisdictions. Common types of abuse include:
Lack of education, lack of self-esteem
and self-advocacy skills, lack of understanding of social norms and appropriate behavior and communication difficulties are strong contributing factors to the high incidence of abuse among this population.
In addition to abuse from people in positions of power, peer abuse is recognized as a significant, if misunderstood, problem. Rates of criminal offense among people with developmental disabilities are also disproportionately high, and it is widely acknowledged that criminal justice systems throughout the world are ill-equipped for the needs of people with developmental disabilities—as both perpetrators and victims of crime.
or elective incontinence).
Challenging behavior in people with developmental disabilities may be caused by a number of factors, including biological (pain, medication, the need for sensory stimulation), social (boredom, seeking social interaction, the need for an element of control, lack of knowledge of community norms, insensitivity of staff and services to the person's wishes and needs), environmental (physical aspects such as noise and lighting, or gaining access to preferred objects or activities), psychological (feeling excluded, lonely, devalued, labelled, disempowered, living up to people's negative expectations) or simply a means of communication. A lot of the time, challenging behavior is learned and brings rewards and it is very often possible to teach people new behaviors to achieve the same aims.
Experience and research suggests that what professionals call "challenging behavior" is often a reaction to the challenging environments that those providing services create around people with developmental disabilities. "Challenging behavior" in this context is a method of communicating dissatisfaction with the failure of those providing services to focus on what kind of life makes most sense to the person, and is often the only recourse a developmentally disabled person has against unsatisfactory services or treatment and the lack of opportunities made available to the person. This is especially the case where the services deliver lifestyles and ways of working that are centered on what suits the service provider and its staff, rather than what best suits the person.
In general, behavioral interventions or what has been termed applied behavior analysis
has been found to be effective in reducing specific challenging behavior Recently, efforts have been placed on developing a developmental pathway model in the behavior analysis literature to prevent challenging behavior from occurring.
in Europe, care and asylum was provided by families and the church (in monasteries and other religious communities), focusing on the provision of basic physical needs such as food, shelter and clothing. Stereotypes such as the dimwitted yokel
, and potentially harmful characterizations (such as demonic possession for people with epilepsy) were prominent in social attitudes of the time. During the Renaissance
communities would sometimes send away those who were developmentally delayed in boats. These ship of fools
, as they would call it, would then show up at another harbor only to be sent away to the next community.
Early in the twentieth century the eugenics
movement became popular throughout the world. This led to the forced sterilization and prohibition of marriage in most of the developed world and was later used by Hitler as rationale for the mass murder of mentally challenged individuals during the Holocaust. The eugenics movement was later proven to be seriously flawed and in violation of human rights and the practice of forced sterilization and prohibition from marriage was discontinued by most of the developed world by the mid 20th century.
The movement towards individualism in the 18th and 19th centuries, and the opportunities afforded by the Industrial Revolution, led to housing and care using the asylum model. People were placed by, or removed from, their families (usually in infancy) and housed in large institutions (of up to 3,000 people, although some institutions were home to many more, such as the Philadelphia State Hospital in Pennsylvania which housed 7,000 people through the 1960s), many of which were self-sufficient through the labor of the residents. Some of these institutions provided a very basic level of education (such as differentiation between colors and basic word recognition and numeracy), but most continued to focus solely on the provision of basic needs. Conditions in such institutions varied widely, but the support provided was generally non-individualized, with aberrant behavior and low levels of economic productivity regarded as a burden to society. Heavy tranquilization and assembly line methods of support (such as "birdfeeding" and cattle herding) were the norm, and the medical model of disability
prevailed. Services were provided based on the relative ease to the provider, not based on the human needs of the individual.
Ignoring the prevailing attitude, Civitans adopted service to the developmentally disabled as a major organizational emphasis in 1952. Their earliest efforts included workshops for special education teachers and daycamps for disabled children, all at a time when such training and programs were almost nonexistent. The segregation of people with developmental disabilities wasn't widely questioned by academics or policy-makers until the 1969 publication of Wolf Wolfensberger
's seminal work "The Origin and Nature of Our Institutional Models", drawing on some of the ideas proposed by SG Howe 100 years earlier. This book posited that society characterizes people with disabilities as deviant, sub-human and burdens of charity, resulting in the adoption of that "deviant" role. Wolfensberger argued that this dehumanization, and the segregated institutions that result from it, ignored the potential productive contributions that all people can make to society. He pushed for a shift in policy and practice that recognized the human needs of "retardates" and provided the same basic human rights as for the rest of the population.
The publication of this book may be regarded as the first move towards the widespread adoption of the social model of disability
in regard to these types of disabilities, and was the impetus for the development of government strategies for desegregation. Successful lawsuit
s against governments and an increasing awareness of human rights and self-advocacy also contributed to this process, resulting in the passing in the U.S. of the Civil Rights of Institutionalized Persons Act
in 1980.
From the 1960s to the present, most states have moved towards the elimination of segregated institutions. Along with the work of Wolfensberger and others including Gunnar and Rosemary Dybwad, a number of scandalous revelations around the horrific conditions within state institutions created public outrage that led to change to a more community-based method of providing services.
By the mid-1970s, most governments had committed to de-institutionalization, and had started preparing for the wholesale movement of people into the general community, in line with the principles of normalization
. In most countries, this was essentially complete by the late 1990s, although the debate over whether or not to close institutions persists in some states, including Massachusetts.
Individuals with developmental disabilities are not fully integrated into society. Person Centred Planning and Person Centered Approaches are seen as methods of addressing the continued labeling and exclusion of socially devalued people, such as people with a developmental disability label, encouraging a focus on the person as someone with capacities and gifts, as well as support needs.
), non-governmental organizations and by private sector
providers. Support services address most aspects of life for people with developmental disabilities, and are usually theoretically based in community inclusion, using concepts such as social role valorization
and increased self-determination (using models such as Person Centred Planning
). Support services are funded through government block funding (paid directly to service providers by the government), through individualized funding packages (paid directly to the individual by the government, specifically for the purchase of services) or privately by the individual (although they may receive certain subsidies or discounts, paid by the government). There also are a number of non-profit agencies dedicated to enriching the lives of people living with developmental disabilities and erasing the barriers they have to being included in their community.
classrooms with support.
Post-secondary education and vocational training
is also increasing for people with these types of disabilities, although many programs offer only segregated "access" courses in areas such as literacy
, numeracy
and other basic skills. Legislation (such as the UK's Disability Discrimination Act 1995
) requires educational institutions and training providers to make "reasonable adjustments" to curriculum and teaching methods in order to accommodate the learning needs of students with disabilities, wherever possible. There are also some vocational training centers that cater specifically to people with disabilities, providing the skills necessary to work in integrated settings, one of the largest being Dale Rogers Training Center
in Oklahoma City
. (See also Intensive interaction
)
or paying bills) to full 24-hour support (including assistance with household tasks, such as cooking
and cleaning, and personal care such as showering, dressing and the administration of medication). The need for full 24-hour support is usually associated with difficulties recognizing safety issues (such as responding to a fire or using a telephone) or for people with potentially dangerous medical conditions (such as asthma or diabetes) who are unable to manage their conditions without assistance.
In the United States
a support worker is known as a Direct Support Professional
(DSP). The DSP works in assisting the individual with their ADLs and also acts as an advocate
for the individual with a developmental disability, in communicating their needs, self expression and goals.
Supports of this type also include assistance to identify and undertake new hobbies or to access community services (such as education), learning appropriate behavior or recognition of community norms, or with relationships and expanding circles of friends. Most programs offering at-home and community support are designed with the goal of increasing the individual's independence, although it is recognized that people with more severe disabilities may never be able to achieve full independence in some areas of daily life.
.
Workers with developmental disabilities have historically been paid less for their labor than those in the general workforce, although this is gradually changing with government initiatives, the enforcement of anti-discrimination legislation and changes in perceptions of capability in the general community.
In the United States, a variety of initiatives have been launched in the past decade to reduce unemployment among workers with disabilities—estimated by researchers at over 60%. Most of these initiatives are directed at employment in mainstream businesses. They include heightened placement efforts by the community agencies serving people with developmental disabilities, as well as by government agencies.
Additionally, state-level initiatives are being put launched to increase employment among workers with disabilities. In California, the state senate in 2009 created the Senate Select Committee on Autism and Related Disorders. The Committee has been examining additions to existing community employment services, and also new employment approaches. Committee member Dr. Lou Vismara, chairman of the MIND Institute at University of California, Davis
, is pursuing the development of a planned community for persons with autism and related disorders in the Sacramento
region. Another committee member, Michael Bernick
, the former director of the state labor department, has established a program at the California state university system, starting at California State University East Bay, to support students with autism on the college level. Other Committee efforts include mutual support employment efforts, such as disability job networks, job boards, and identifying business lines that build on the strengths of persons with disabilities.
Traditional day centers were based on the principles of occupational therapy
, and were created as respite
for family members caring for their loved ones with disabilities. This is slowly changing, however, as programs offered become more skills-based and focused on increasing independence.
is a burgeoning support field for people with developmental disabilities. Advocacy groups now exist in most jurisdictions, working collaboratively with people with disabilities for systemic change (such as changes in policy and legislation) and for changes for individuals (such as claiming welfare benefits or when responding to abuse). Most advocacy groups also work to support people, throughout the world, to increase their capacity for self-advocacy
, teaching the skills necessary for people to advocate for their own needs.
Disability
A disability may be physical, cognitive, mental, sensory, emotional, developmental or some combination of these.Many people would rather be referred to as a person with a disability instead of handicapped...
attributable to mental or physical impairments, manifested prior to age 18. It is not synonymous with "developmental delay" which is often a consequence of a temporary illness or trauma during childhood.
Terminology and history
The term is used most commonly in the U.S. and Canada to refer to disabilities affecting daily functioning in three or more of the following areas: capacity for independent living, economic self-sufficiencySelf-sufficiency
Self-sufficiency refers to the state of not requiring any outside aid, support, or interaction, for survival; it is therefore a type of personal or collective autonomy...
, learning
Learning
Learning is acquiring new or modifying existing knowledge, behaviors, skills, values, or preferences and may involve synthesizing different types of information. The ability to learn is possessed by humans, animals and some machines. Progress over time tends to follow learning curves.Human learning...
, mobility
Mobility
Mobility may refer to:* Mobility * "Mobiliy" , a song by Moby* Mobility * Mobility , the ability of military units or weapon systems to move to an objective-See also:* Academic mobility* Apprentices mobility...
, receptive and expressive language
Language
Language may refer either to the specifically human capacity for acquiring and using complex systems of communication, or to a specific instance of such a system of complex communication...
, self-care
Self-care
Self care is personal health maintenance. It is any activity of an individual, family or community, with the intention of improving or restoring health, or treating or preventing disease....
, and self-direction.
The term first appeared in U.S. law in 1970, when Congress used the term to describe the population of individuals who had historically been placed in state institutions, in its effort to improve conditions in these dehumanizing facilities (P.L. 91-517, "The Developmental Disabilities Services and Facilities Construction Act of 1970"). The law has since been amended many times, and now calls for the full community inclusion and self-determination of people with developmental disabilities (P.L. 106-402).
It is currently defined in United States Code
United States Code
The Code of Laws of the United States of America is a compilation and codification of the general and permanent federal laws of the United States...
title 42, Chapter 144.
Frequently, people with mental retardation
Mental retardation
Mental retardation is a generalized disorder appearing before adulthood, characterized by significantly impaired cognitive functioning and deficits in two or more adaptive behaviors...
, cerebral palsy
Cerebral palsy
Cerebral palsy is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement....
, autism spectrum disorders, various genetic and chromosomal disorders
Genetic disorder
A genetic disorder is an illness caused by abnormalities in genes or chromosomes, especially a condition that is present from before birth. Most genetic disorders are quite rare and affect one person in every several thousands or millions....
such as Down syndrome
Down syndrome
Down syndrome, or Down's syndrome, trisomy 21, is a chromosomal condition caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British physician who described the syndrome in 1866. The condition was clinically described earlier in the 19th...
, Fragile X syndrome
Fragile X syndrome
Fragile X syndrome , Martin–Bell syndrome, or Escalante's syndrome , is a genetic syndrome that is the most commonly known single-gene cause of autism and the most common inherited cause of intellectual disability...
, and Fetal Alcohol Spectrum Disorder
Fetal alcohol spectrum disorder
Fetal Alcohol Spectrum Disorders describes a continuum of permanent birth defects caused by maternal consumption of alcohol during pregnancy, which includes, but is not limited to fetal alcohol syndrome...
s are described as having developmental disabilities or delays. Generally, in the United States, special school supports (special education) are made available for many developmentally disabled children concurrent to the administration of intelligence quotient (IQ) scales or measures indicating a score of 70 or less. A score of 100 is average, with half of any population falling above and half below such an average individual.
Developmental disabilities are usually classified as severe, profound, moderate or mild, as assessed by the individual's need for supports, which may be lifelong. Generally, persons in the mild category may be able to live independently and participate in lifelong employment. Special vocational (sheltered workshops) and community socialization training are often required to attain such mastery. Moderate category persons will, most often, need varying levels of support from their families or from community agencies. The profound and severe category persons are more likely to have very high levels of dependence with many requiring intensive supports as their mastery of activities of daily living (ADLs) is generally quite limited or non-existent. Significant medical complications, such as epileptic seizures, swallowing difficulties, speech impairments, ambulation limitations, and a reduced life expectancy are more likely for persons in the profound impairment category.
Causes of developmental disabilities
There are many social, environmental and physical causes of developmental disabilities, although for some a definitive cause may never be determined. Common factors causing developmental disabilities include:- Brain injuryTraumatic brain injuryTraumatic brain injury , also known as intracranial injury, occurs when an external force traumatically injures the brain. TBI can be classified based on severity, mechanism , or other features...
or infection before, during or after birth; - Growth or nutritionNutritionNutrition is the provision, to cells and organisms, of the materials necessary to support life. Many common health problems can be prevented or alleviated with a healthy diet....
problems (prenatally, perinatally, or postnatally); - Abnormalities of chromosomes and geneGeneA gene is a molecular unit of heredity of a living organism. It is a name given to some stretches of DNA and RNA that code for a type of protein or for an RNA chain that has a function in the organism. Living beings depend on genes, as they specify all proteins and functional RNA chains...
s; - Birth long before the expected birth date - also called extreme prematurityPremature birthIn humans preterm birth refers to the birth of a baby of less than 37 weeks gestational age. The cause for preterm birth is in many situations elusive and unknown; many factors appear to be associated with the development of preterm birth, making the reduction of preterm birth a challenging...
; - Poor maternal dietDiet (nutrition)In nutrition, diet is the sum of food consumed by a person or other organism. Dietary habits are the habitual decisions an individual or culture makes when choosing what foods to eat. With the word diet, it is often implied the use of specific intake of nutrition for health or weight-management...
and absent or minimal health careHealth careHealth care is the diagnosis, treatment, and prevention of disease, illness, injury, and other physical and mental impairments in humans. Health care is delivered by practitioners in medicine, chiropractic, dentistry, nursing, pharmacy, allied health, and other care providers...
; - Drug abuseDrug abuseSubstance abuse, also known as drug abuse, refers to a maladaptive pattern of use of a substance that is not considered dependent. The term "drug abuse" does not exclude dependency, but is otherwise used in a similar manner in nonmedical contexts...
during pregnancyPregnancyPregnancy refers to the fertilization and development of one or more offspring, known as a fetus or embryo, in a woman's uterus. In a pregnancy, there can be multiple gestations, as in the case of twins or triplets...
, including alcoholAlcoholIn chemistry, an alcohol is an organic compound in which the hydroxy functional group is bound to a carbon atom. In particular, this carbon center should be saturated, having single bonds to three other atoms....
intake and smokingTobacco smokingTobacco smoking is the practice where tobacco is burned and the resulting smoke is inhaled. The practice may have begun as early as 5000–3000 BCE. Tobacco was introduced to Eurasia in the late 16th century where it followed common trade routes...
; - Drug-related prenatal developmental insult, such as thalidomideThalidomideThalidomide was introduced as a sedative drug in the late 1950s that was typically used to cure morning sickness. In 1961, it was withdrawn due to teratogenicity and neuropathy. There is now a growing clinical interest in thalidomide, and it is introduced as an immunomodulatory agent used...
; - Severe physical maltreatment (child abuseChild abuseChild abuse is the physical, sexual, emotional mistreatment, or neglect of a child. In the United States, the Centers for Disease Control and Prevention and the Department of Children And Families define child maltreatment as any act or series of acts of commission or omission by a parent or...
), which may have caused brain injury and which can adversely effect a child's learning abilities and socio-emotional development; - An autism spectrumAutism spectrumThe term "autism spectrum" is often used to describe disorders that are currently classified as pervasive developmental disorders. Pervasive developmental disorders include autism, Asperger syndrome, Childhood disintegrative disorder, Rett syndrome and Pervasive Developmental Disorder Not Otherwise...
disorder.
Developmental disabilities affect between 1 and 2% of the population in most western countries, although many government sources acknowledge that statistics are flawed in this area. The worldwide proportion of people with developmental disabilities is believed to be approximately 1.4%. It is twice as common in males as in females, and some researchers have found that the prevalence of mild developmental disabilities is likely to be higher in areas of poverty and deprivation, and among people of certain ethnicities.
Physical health issues
There are many physical healthHealth
Health is the level of functional or metabolic efficiency of a living being. In humans, it is the general condition of a person's mind, body and spirit, usually meaning to be free from illness, injury or pain...
factors associated with developmental disabilities. For some specific syndromes and diagnoses, these are inherent (such as poor heart function in people with Down syndrome); however lack of access to health services and lack of understanding by medical professionals is also a major contributing factor. People with severe communication
Communication
Communication is the activity of conveying meaningful information. Communication requires a sender, a message, and an intended recipient, although the receiver need not be present or aware of the sender's intent to communicate at the time of communication; thus communication can occur across vast...
difficulties find it difficult to articulate their health needs, and without adequate support and education might not recognize ill health
Illness
Illness is a state of poor health. Illness is sometimes considered another word for disease. Others maintain that fine distinctions exist...
. Epilepsy
Epilepsy
Epilepsy is a common chronic neurological disorder characterized by seizures. These seizures are transient signs and/or symptoms of abnormal, excessive or hypersynchronous neuronal activity in the brain.About 50 million people worldwide have epilepsy, and nearly two out of every three new cases...
, sensory problems (such as poor vision
Visual perception
Visual perception is the ability to interpret information and surroundings from the effects of visible light reaching the eye. The resulting perception is also known as eyesight, sight, or vision...
and hearing
Hearing (sense)
Hearing is the ability to perceive sound by detecting vibrations through an organ such as the ear. It is one of the traditional five senses...
), obesity
Obesity
Obesity is a medical condition in which excess body fat has accumulated to the extent that it may have an adverse effect on health, leading to reduced life expectancy and/or increased health problems...
and poor dental health
Oral hygiene
Teeth cleaning is part of oral hygiene and involves the removal of dental plaque from teeth with the intention of preventing cavities , gingivitis, and periodontal disease. People routinely clean their own teeth by brushing and interdental cleaning, and dental hygienists can remove hardened...
are over-represented in this population. Life expectancy
Life expectancy
Life expectancy is the expected number of years of life remaining at a given age. It is denoted by ex, which means the average number of subsequent years of life for someone now aged x, according to a particular mortality experience...
among people with developmental disabilities as a group is estimated at 20 years below average, although this is improving with advancements in adaptive and medical technologies, and as people are leading healthier, more fulfilling lives, and some conditions (such as Freeman-Sheldon syndrome
Freeman-Sheldon syndrome
Freeman-Sheldon syndrome , also termed distal arthrogryposis type 2A , craniocarpotarsal dysplasia , Cranio-carpo-tarsal syndrome, Windmill-Vane-Hand syndrome, or Whistling-face syndrome, was originally described by Freeman and Sheldon in 1938...
) do not impact life expectancy.
Mental health issues (dual diagnoses)
Mental healthMental health
Mental health describes either a level of cognitive or emotional well-being or an absence of a mental disorder. From perspectives of the discipline of positive psychology or holism mental health may include an individual's ability to enjoy life and procure a balance between life activities and...
issues, and psychiatric illnesses
Mental illness
A mental disorder or mental illness is a psychological or behavioral pattern generally associated with subjective distress or disability that occurs in an individual, and which is not a part of normal development or culture. Such a disorder may consist of a combination of affective, behavioural,...
, are more likely to occur in people with developmental disabilities than in the general population. A number of factors are attributed to the high incidence rate of dual diagnoses:
- The high likelihood of encountering traumaticPsychological traumaPsychological trauma is a type of damage to the psyche that occurs as a result of a traumatic event...
events throughout their lifetime (such as abandonment by loved ones, abuseAbuseAbuse is the improper usage or treatment for a bad purpose, often to unfairly or improperly gain benefit. Abuse can come in many forms, such as: physical or verbal maltreatment, injury, sexual assault, violation, rape, unjust practices; wrongful practice or custom; offense; crime, or otherwise...
, bullying and harassmentHarassmentHarassment covers a wide range of behaviors of an offensive nature. It is commonly understood as behaviour intended to disturb or upset, and it is characteristically repetitive. In the legal sense, it is intentional behaviour which is found threatening or disturbing...
) - The social and developmental restrictions placed upon people with developmental disabilities (such as lack of educationEducationEducation in its broadest, general sense is the means through which the aims and habits of a group of people lives on from one generation to the next. Generally, it occurs through any experience that has a formative effect on the way one thinks, feels, or acts...
, povertyPovertyPoverty is the lack of a certain amount of material possessions or money. Absolute poverty or destitution is inability to afford basic human needs, which commonly includes clean and fresh water, nutrition, health care, education, clothing and shelter. About 1.7 billion people are estimated to live...
, limited employmentEmploymentEmployment is a contract between two parties, one being the employer and the other being the employee. An employee may be defined as:- Employee :...
opportunities, limited opportunities for fulfilling relationships, boredom) - Biological factors (such as brain injury, epilepsyEpilepsyEpilepsy is a common chronic neurological disorder characterized by seizures. These seizures are transient signs and/or symptoms of abnormal, excessive or hypersynchronous neuronal activity in the brain.About 50 million people worldwide have epilepsy, and nearly two out of every three new cases...
, illicit and prescribed drug and alcohol misuse) - Developmental factors (such as lack of understanding of social norms and appropriate behavior, inability of those around to allow/understand expressions of grief and other human emotions)
- External monitoring factor: all people with developmental disabilities that are in a Federal or State funded residence require the residence to have some form of behavioral monitoring for each person with developmental disability at the residence. With this information psychological diagnoses are more easily given than with the general population that has less consistent monitoring.
- Access to health care providers: in the U.S., all people with developmental disabilities that are in a Federal or State funded residence require the residence to have annual visits to various health care providers (nurse, physician, psychologist, psychiatrist, etc.). With consistent visits to health care providers more people with developmental disabilities are likely to receive appropriate treatment than the general population that is not required to visit various health care providers.
These problems are exacerbated by difficulties in diagnosis of mental health issues, and in appropriate treatment and medication, as for physical health issues.
Abuse and vulnerability
AbuseAbuse
Abuse is the improper usage or treatment for a bad purpose, often to unfairly or improperly gain benefit. Abuse can come in many forms, such as: physical or verbal maltreatment, injury, sexual assault, violation, rape, unjust practices; wrongful practice or custom; offense; crime, or otherwise...
is a significant issue for people with developmental disabilities, and as a group they are regarded as vulnerable
Vulnerability
Vulnerability refer to the susceptibility of a person, group, society, sex or system to physical or emotional injury or attack. The term can also refer to a person who lets their guard down, leaving themselves open to censure or criticism...
people in most jurisdictions. Common types of abuse include:
- Physical abusePhysical abusePhysical abuse is abuse involving contact intended to cause feelings of intimidation, injury, or other physical suffering or bodily harm.-Forms of physical abuse:*Striking*Punching*Belting*Pushing, pulling*Slapping*Whipping*Striking with an object...
(withholding food, hitting, punching, pushing, etc.) - NeglectNeglectNeglect is a passive form of abuse in which a perpetrator is responsible to provide care for a victim who is unable to care for himself or herself, but fails to provide adequate care....
(withholding help when required, e.g., assistance with personal hygiene) - Sexual abuseSexual abuseSexual abuse, also referred to as molestation, is the forcing of undesired sexual behavior by one person upon another. When that force is immediate, of short duration, or infrequent, it is called sexual assault. The offender is referred to as a sexual abuser or molester...
- Psychological or emotional abuse (verbal abuseVerbal abuseVerbal abuse is best described as a negative defining statement told to you or about you; or by withholding any response thus defining the target as non-existant...
, shaming and belittling) - Constraint and restrictive practices (turning off an electric wheelchair so a person cannot move)
- Financial abuse (charging unnecessary fees, holding onto pensions, wages, etc.)
- LegalLegal abuseLegal abuse refers to abuses associated with both civil and criminal legal action. Abuse can originate from nearly any part of the legal system, including frivolous and vexatious litigants, abuses by law enforcement, incompetent, careless or corrupt attorneys and misconduct from the judiciary...
or civil abuse (restricted access to services) - Systemic abuse (denied access to an appropriate service due to perceived support needs)
- Passive neglect (a caregiver's failure to provide adequate food, shelter)
Lack of education, lack of self-esteem
Self-esteem
Self-esteem is a term in psychology to reflect a person's overall evaluation or appraisal of his or her own worth. Self-esteem encompasses beliefs and emotions such as triumph, despair, pride and shame: some would distinguish how 'the self-concept is what we think about the self; self-esteem, the...
and self-advocacy skills, lack of understanding of social norms and appropriate behavior and communication difficulties are strong contributing factors to the high incidence of abuse among this population.
In addition to abuse from people in positions of power, peer abuse is recognized as a significant, if misunderstood, problem. Rates of criminal offense among people with developmental disabilities are also disproportionately high, and it is widely acknowledged that criminal justice systems throughout the world are ill-equipped for the needs of people with developmental disabilities—as both perpetrators and victims of crime.
Challenging behavior
Some people with developmental disabilities exhibit challenging behavior, defined as "culturally abnormal behaviour(s) of such intensity, frequency or duration that the physical safety of the person or others is placed in serious jeopardy, or behaviour which is likely to seriously limit or deny access to the use of ordinary community facilities". Common types of challenging behavior include self-injurious behavior (such as hitting, headbutting, biting), aggressive behavior (such as hitting others, screaming, spitting, kicking, swearing, hairpulling), inappropriate sexualized behavior (such as public masturbation or groping), behavior directed at property (such as throwing objects and stealing) and stereotyped behaviors (such as repetitive rocking, echolaliaEcholalia
Echolalia is the automatic repetition of vocalizations made by another person. It is closely related to echopraxia, the automatic repetition of movements made by another person....
or elective incontinence).
Challenging behavior in people with developmental disabilities may be caused by a number of factors, including biological (pain, medication, the need for sensory stimulation), social (boredom, seeking social interaction, the need for an element of control, lack of knowledge of community norms, insensitivity of staff and services to the person's wishes and needs), environmental (physical aspects such as noise and lighting, or gaining access to preferred objects or activities), psychological (feeling excluded, lonely, devalued, labelled, disempowered, living up to people's negative expectations) or simply a means of communication. A lot of the time, challenging behavior is learned and brings rewards and it is very often possible to teach people new behaviors to achieve the same aims.
Experience and research suggests that what professionals call "challenging behavior" is often a reaction to the challenging environments that those providing services create around people with developmental disabilities. "Challenging behavior" in this context is a method of communicating dissatisfaction with the failure of those providing services to focus on what kind of life makes most sense to the person, and is often the only recourse a developmentally disabled person has against unsatisfactory services or treatment and the lack of opportunities made available to the person. This is especially the case where the services deliver lifestyles and ways of working that are centered on what suits the service provider and its staff, rather than what best suits the person.
In general, behavioral interventions or what has been termed applied behavior analysis
Applied Behavior Analysis
Applied behavior analysis is a science that involves using modern behavioral learning theory to modify behaviors. Behavior analysts reject the use of hypothetical constructs and focus on the observable relationship of behavior to the environment...
has been found to be effective in reducing specific challenging behavior Recently, efforts have been placed on developing a developmental pathway model in the behavior analysis literature to prevent challenging behavior from occurring.
Societal attitudes towards developmental disabilities
Throughout history, people with developmental disabilities have been viewed as incapable and incompetent in their capacity for decision-making and development. Until the EnlightenmentAge of Enlightenment
The Age of Enlightenment was an elite cultural movement of intellectuals in 18th century Europe that sought to mobilize the power of reason in order to reform society and advance knowledge. It promoted intellectual interchange and opposed intolerance and abuses in church and state...
in Europe, care and asylum was provided by families and the church (in monasteries and other religious communities), focusing on the provision of basic physical needs such as food, shelter and clothing. Stereotypes such as the dimwitted yokel
Yokel
Yokel is a derogatory term referring to the stereotype of unsophisticated country people.-Stereotype:In the US, it is used to describe someone living in rural areas...
, and potentially harmful characterizations (such as demonic possession for people with epilepsy) were prominent in social attitudes of the time. During the Renaissance
Renaissance
The Renaissance was a cultural movement that spanned roughly the 14th to the 17th century, beginning in Italy in the Late Middle Ages and later spreading to the rest of Europe. The term is also used more loosely to refer to the historical era, but since the changes of the Renaissance were not...
communities would sometimes send away those who were developmentally delayed in boats. These ship of fools
Ship of Fools
The ship of fools is an allegory that has long been a fixture in Western literature and art. The allegory depicts a vessel populated by human inhabitants who are deranged, frivolous, or oblivious, passengers aboard a ship without a pilot, and seemingly ignorant of their own direction...
, as they would call it, would then show up at another harbor only to be sent away to the next community.
Early in the twentieth century the eugenics
Eugenics
Eugenics is the "applied science or the bio-social movement which advocates the use of practices aimed at improving the genetic composition of a population", usually referring to human populations. The origins of the concept of eugenics began with certain interpretations of Mendelian inheritance,...
movement became popular throughout the world. This led to the forced sterilization and prohibition of marriage in most of the developed world and was later used by Hitler as rationale for the mass murder of mentally challenged individuals during the Holocaust. The eugenics movement was later proven to be seriously flawed and in violation of human rights and the practice of forced sterilization and prohibition from marriage was discontinued by most of the developed world by the mid 20th century.
The movement towards individualism in the 18th and 19th centuries, and the opportunities afforded by the Industrial Revolution, led to housing and care using the asylum model. People were placed by, or removed from, their families (usually in infancy) and housed in large institutions (of up to 3,000 people, although some institutions were home to many more, such as the Philadelphia State Hospital in Pennsylvania which housed 7,000 people through the 1960s), many of which were self-sufficient through the labor of the residents. Some of these institutions provided a very basic level of education (such as differentiation between colors and basic word recognition and numeracy), but most continued to focus solely on the provision of basic needs. Conditions in such institutions varied widely, but the support provided was generally non-individualized, with aberrant behavior and low levels of economic productivity regarded as a burden to society. Heavy tranquilization and assembly line methods of support (such as "birdfeeding" and cattle herding) were the norm, and the medical model of disability
Medical model of disability
The medical model of disability is a sociopolitical model by which illness or disability, being the result of a physical condition, and which is intrinsic to the individual , may reduce the individual's quality of life, and causes clear disadvantages to the individual.It is today specifically...
prevailed. Services were provided based on the relative ease to the provider, not based on the human needs of the individual.
Ignoring the prevailing attitude, Civitans adopted service to the developmentally disabled as a major organizational emphasis in 1952. Their earliest efforts included workshops for special education teachers and daycamps for disabled children, all at a time when such training and programs were almost nonexistent. The segregation of people with developmental disabilities wasn't widely questioned by academics or policy-makers until the 1969 publication of Wolf Wolfensberger
Wolf Wolfensberger
Wolf Wolfensberger Born in Mannheim, Germany in 1934, Dr. Wolfensberger was an American academic who influenced disability policy and practice in the United States and elsewhere through his development of Social Role Valorisation . SRV extended the work of Bengt Nirje in Europe on Normalisation...
's seminal work "The Origin and Nature of Our Institutional Models", drawing on some of the ideas proposed by SG Howe 100 years earlier. This book posited that society characterizes people with disabilities as deviant, sub-human and burdens of charity, resulting in the adoption of that "deviant" role. Wolfensberger argued that this dehumanization, and the segregated institutions that result from it, ignored the potential productive contributions that all people can make to society. He pushed for a shift in policy and practice that recognized the human needs of "retardates" and provided the same basic human rights as for the rest of the population.
The publication of this book may be regarded as the first move towards the widespread adoption of the social model of disability
Social model of disability
The social model of disability is a reaction to the dominant medical model of disability which in itself is a Cartesian functional analysis of the body as machine to be fixed in order to conform with normative values...
in regard to these types of disabilities, and was the impetus for the development of government strategies for desegregation. Successful lawsuit
Lawsuit
A lawsuit or "suit in law" is a civil action brought in a court of law in which a plaintiff, a party who claims to have incurred loss as a result of a defendant's actions, demands a legal or equitable remedy. The defendant is required to respond to the plaintiff's complaint...
s against governments and an increasing awareness of human rights and self-advocacy also contributed to this process, resulting in the passing in the U.S. of the Civil Rights of Institutionalized Persons Act
Civil Rights of Institutionalized Persons Act
The Civil Rights of Institutionalized Persons Act of 1980 is a United States federal law intended to protect the rights of people in state or local correctional facilities, nursing homes, mental health facilities and institutions for people with intellectual and developmental disabilities.CRIPA is...
in 1980.
From the 1960s to the present, most states have moved towards the elimination of segregated institutions. Along with the work of Wolfensberger and others including Gunnar and Rosemary Dybwad, a number of scandalous revelations around the horrific conditions within state institutions created public outrage that led to change to a more community-based method of providing services.
By the mid-1970s, most governments had committed to de-institutionalization, and had started preparing for the wholesale movement of people into the general community, in line with the principles of normalization
Normalisation (people with disabilities)
“The normalization principle means making available to all people with disabilities people patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society.”- Definition :...
. In most countries, this was essentially complete by the late 1990s, although the debate over whether or not to close institutions persists in some states, including Massachusetts.
Individuals with developmental disabilities are not fully integrated into society. Person Centred Planning and Person Centered Approaches are seen as methods of addressing the continued labeling and exclusion of socially devalued people, such as people with a developmental disability label, encouraging a focus on the person as someone with capacities and gifts, as well as support needs.
Services and support
Today, support services are provided by government agencies (such as MRDDMRDD
MRDD or MR/DD, short for Mental Retardation and Developmental Disabilities, refers to services designed to assist mentally and developmentally challenged people and their families...
), non-governmental organizations and by private sector
Private sector
In economics, the private sector is that part of the economy, sometimes referred to as the citizen sector, which is run by private individuals or groups, usually as a means of enterprise for profit, and is not controlled by the state...
providers. Support services address most aspects of life for people with developmental disabilities, and are usually theoretically based in community inclusion, using concepts such as social role valorization
Social role valorization
In psychology and social work practice, Social Role Valorization is the name given to an analysis of human relationships and human services, formulated in 1983 by Wolf Wolfensberger, PhD, as the successor to his earlier formulation of the principle of Normalization...
and increased self-determination (using models such as Person Centred Planning
Person Centred Planning
Person-centred planning is a set of approaches designed to assist someone to plan their life and supports. It is used most often as a life planning model to enable individuals with disabilities or otherwise requiring support to increase their personal self-determination and improve their own...
). Support services are funded through government block funding (paid directly to service providers by the government), through individualized funding packages (paid directly to the individual by the government, specifically for the purchase of services) or privately by the individual (although they may receive certain subsidies or discounts, paid by the government). There also are a number of non-profit agencies dedicated to enriching the lives of people living with developmental disabilities and erasing the barriers they have to being included in their community.
Education and training
Education and training opportunities for people with developmental disabilities have expanded greatly in recent times, with many governments mandating universal access to educational facilities, and more students moving out of special schools and into mainstreamMainstreaming in education
Mainstreaming in the context of education is a term that refers to the practice of educating students with special needs in regular classes during specific time periods based on their skills. This means regular education classes are combined with special education classes...
classrooms with support.
Post-secondary education and vocational training
Vocational education
Vocational education or vocational education and training is an education that prepares trainees for jobs that are based on manual or practical activities, traditionally non-academic, and totally related to a specific trade, occupation, or vocation...
is also increasing for people with these types of disabilities, although many programs offer only segregated "access" courses in areas such as literacy
Literacy
Literacy has traditionally been described as the ability to read for knowledge, write coherently and think critically about printed material.Literacy represents the lifelong, intellectual process of gaining meaning from print...
, numeracy
Numeracy
Numeracy is the ability to reason with numbers and other mathematical concepts. A numerically literate person can manage and respond to the mathematical demands of life...
and other basic skills. Legislation (such as the UK's Disability Discrimination Act 1995
Disability Discrimination Act 1995
The Disability Discrimination Act 1995 is an Act of the Parliament of the United Kingdom which has now been repealed and replaced by the Equality Act 2010 , except in Northern Ireland where the Act still applies...
) requires educational institutions and training providers to make "reasonable adjustments" to curriculum and teaching methods in order to accommodate the learning needs of students with disabilities, wherever possible. There are also some vocational training centers that cater specifically to people with disabilities, providing the skills necessary to work in integrated settings, one of the largest being Dale Rogers Training Center
Dale Rogers Training Center
Dale Rogers Training Center , a non-profit organization, is the oldest and largest community vocational training and employment center for individuals with disabilities in Oklahoma. With five locations in Oklahoma, Dale Rogers Training Center trains or employs 1100 people a year: more than 900 with...
in Oklahoma City
Oklahoma city
Oklahoma City is the capital and largest city of the U.S. state of Oklahoma.Oklahoma City may also refer to:*Oklahoma City metropolitan area*Downtown Oklahoma City*Uptown Oklahoma City*Oklahoma City bombing*Oklahoma City National Memorial...
. (See also Intensive interaction
Intensive interaction
Intensive Interaction is an approach for teaching communication skills to children and adults who have autism, severe learning difficulties and profound and multiple learning difficulties who are still at early stages of development...
)
At-home and community support
Many people with developmental disabilities live in the general community, either with family members, in supervised-group homes or in their own homes (that they rent or own, living alone or with flatmates). At-home and community supports range from one-to-one assistance from a support worker with identified aspects of daily living (such as budgeting, shoppingShopping
Shopping is the examining of goods or services from retailers with the intent to purchase at that time. Shopping is an activity of selection and/or purchase. In some contexts it is considered a leisure activity as well as an economic one....
or paying bills) to full 24-hour support (including assistance with household tasks, such as cooking
Cooking
Cooking is the process of preparing food by use of heat. Cooking techniques and ingredients vary widely across the world, reflecting unique environmental, economic, and cultural traditions. Cooks themselves also vary widely in skill and training...
and cleaning, and personal care such as showering, dressing and the administration of medication). The need for full 24-hour support is usually associated with difficulties recognizing safety issues (such as responding to a fire or using a telephone) or for people with potentially dangerous medical conditions (such as asthma or diabetes) who are unable to manage their conditions without assistance.
In the United States
United States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
a support worker is known as a Direct Support Professional
Direct Support Professional
Direct support professionals are people who work directly with people with developmental disabilities with the aim of assisting the individual to become integrated into his /her community or the least restrictive environment....
(DSP). The DSP works in assisting the individual with their ADLs and also acts as an advocate
Advocate
An advocate is a term for a professional lawyer used in several different legal systems. These include Scotland, South Africa, India, Scandinavian jurisdictions, Israel, and the British Crown dependencies of Jersey, Guernsey and the Isle of Man...
for the individual with a developmental disability, in communicating their needs, self expression and goals.
Supports of this type also include assistance to identify and undertake new hobbies or to access community services (such as education), learning appropriate behavior or recognition of community norms, or with relationships and expanding circles of friends. Most programs offering at-home and community support are designed with the goal of increasing the individual's independence, although it is recognized that people with more severe disabilities may never be able to achieve full independence in some areas of daily life.
Residential accommodation
Some people with developmental disabilities live in residential accommodation (also known as group homes) with other people with similar assessed needs. These homes are usually staffed around the clock, and usually house between 3 and 15 residents. The prevalence of this type of support is gradually decreasing, however, as residential accommodation is replaced by at-home and community support, which can offer increased choice and self-determination for individuals. Some U.S. states still provide institutional care, such as the Texas State SchoolsTexas State Schools
Texas state supported living centers are a collection of residential facilities run by the state for people with developmental disabilities in Texas, United States...
.
Employment support
Employment support usually consists of two types of support:- Support to access or participate in integrated employment, in a workplace in the general community. This may include specific programs to increase the skills needed for successful employment (work preparation), one-to-one or small group support for on-the-job training, or one-to-one or small group support after a transition period (such as advocacy when dealing with an employer or a bullying colleague, or assistance to complete an application for a promotion).
- The provision of specific employment opportunities within segregated business services. Although these are designed as "transitional" services (teaching work skills needed to move into integrated employment), many people remain in such services for the duration of their working life. The types of work performed in business services include mailing and packaging services, cleaning, gardening and landscaping, timberwork, metal fabrication, farming and sewing.
Workers with developmental disabilities have historically been paid less for their labor than those in the general workforce, although this is gradually changing with government initiatives, the enforcement of anti-discrimination legislation and changes in perceptions of capability in the general community.
In the United States, a variety of initiatives have been launched in the past decade to reduce unemployment among workers with disabilities—estimated by researchers at over 60%. Most of these initiatives are directed at employment in mainstream businesses. They include heightened placement efforts by the community agencies serving people with developmental disabilities, as well as by government agencies.
Additionally, state-level initiatives are being put launched to increase employment among workers with disabilities. In California, the state senate in 2009 created the Senate Select Committee on Autism and Related Disorders. The Committee has been examining additions to existing community employment services, and also new employment approaches. Committee member Dr. Lou Vismara, chairman of the MIND Institute at University of California, Davis
University of California, Davis
The University of California, Davis is a public teaching and research university established in 1905 and located in Davis, California, USA. Spanning over , the campus is the largest within the University of California system and third largest by enrollment...
, is pursuing the development of a planned community for persons with autism and related disorders in the Sacramento
Sacramento
Sacramento is the capital of the state of California, in the United States of America.Sacramento may also refer to:- United States :*Sacramento County, California*Sacramento, Kentucky*Sacramento – San Joaquin River Delta...
region. Another committee member, Michael Bernick
Michael S. Bernick
Michael S. Bernick served as Director of California’s labor department, the Employment Development Department from 1999 to 2004. He is a practitioner and theorist of job training...
, the former director of the state labor department, has established a program at the California state university system, starting at California State University East Bay, to support students with autism on the college level. Other Committee efforts include mutual support employment efforts, such as disability job networks, job boards, and identifying business lines that build on the strengths of persons with disabilities.
Day services
Non-vocational day services are usually known as day centers, and are traditionally segregated services offering training in life skills (such as meal preparation and basic literacy), center-based activities (such as crafts, games and music classes) and external activities (such as day trips). Some more progressive day centers also support people to access vocational training opportunities (such as college courses), and offer individualized outreach services (planning and undertaking activities with the individual, with support offered one-to-one or in small groups).Traditional day centers were based on the principles of occupational therapy
Occupational therapy
Occupational therapy is a discipline that aims to promote health by enabling people to perform meaningful and purposeful activities. Occupational therapists work with individuals who suffer from a mentally, physically, developmentally, and/or emotionally disabling condition by utilizing treatments...
, and were created as respite
Respite care
Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home....
for family members caring for their loved ones with disabilities. This is slowly changing, however, as programs offered become more skills-based and focused on increasing independence.
Advocacy
AdvocacyAdvocacy
Advocacy is a political process by an individual or a large group which normally aims to influence public-policy and resource allocation decisions within political, economic, and social systems and institutions; it may be motivated from moral, ethical or faith principles or simply to protect an...
is a burgeoning support field for people with developmental disabilities. Advocacy groups now exist in most jurisdictions, working collaboratively with people with disabilities for systemic change (such as changes in policy and legislation) and for changes for individuals (such as claiming welfare benefits or when responding to abuse). Most advocacy groups also work to support people, throughout the world, to increase their capacity for self-advocacy
Self-advocacy
Self-advocacy refers to the civil rights movement for people with developmental disabilities, also called cognitive or intellectual disabilities, and other disabilities. It is also an important term in the disability rights movement, referring to people with disabilities taking control of their own...
, teaching the skills necessary for people to advocate for their own needs.
Other types of support
Other types of support for people with developmental disabilities may include:- therapeutic services, such as speech therapy, occupational therapy, physical therapy, massage, aromatherapy, art, dance/movement or music therapy
- supported holidays
- short-stay respite services (for people who live with family members or other unpaid carers)
- transport services, such as dial-a-ride or free bus passes
- specialist behavior support services, such as high-security services for people with high-level, high-risk challenging behaviors
- specialist relationships and sex education services
See also
- List of disability rights activists
- List of disability rights organizations
- American Coalition of Citizens with DisabilitiesAmerican Coalition of Citizens with DisabilitiesThe American Coalition of Citizens with Disabilities was, in the mid-1970s to early 1980s, a national consumer-led disability rights organization called, by nationally syndicated columnist Jack Anderson and others, “the handicapped lobby”...
- Behavioral CuspBehavioral cuspA behavioral cusp is any behavior change that brings an organism's behavior into contact with new contingencies that have far-reaching consequences...
Further reading
- Developmental-Behavioral Pediatrics, 4th Edition - Expert Consult - Online and Print By William B. Carey, MD, Allen C. Crocker, MD, Ellen Roy Elias, MD, Heidi M. Feldman, MD, PhD and William L. Coleman, MD
- Advocacy and Learning Disability. Barry Gray and Robin Jackson (Eds) London: Jessica Kingsley Publishers, 2002
- US Administration on Developmental Disabilities fact sheet
- A Short History of the Treatment of Persons with Mental Retardation
- Real Lives: Contemporary supports to people with mental retardation (1998)
- Rights of People with Intellectual Disabilities: Access to Education and Employment, bilingual reports on 14 European countries
- Australian Institute of Health and Welfare paper The Definition and Prevalence of Intellectual Disability in Australia
- 2001 New Zealand Snapshot of Intellectual Disability
- People with Intellectual Disabilities: from Invisible to Visible Citizens of the EU Accession Countries
- Policy brief: Education and Employment in the UK
- The American Bar Association's paper Invisible Victims: Violence against persons with developmental disabilities
- Persons With Intellectual Disability Who Are Incarcerated For Criminal Offences (Canadian paper)
- 'Fighting to keep 'em in', Ragged Edge magazine January 1998
- Wishart, G.D. (2003) The Sexual Abuse of People with Learning Difficulties: Do We Need A Social Model Approach To Vulnerability? Journal of Adult Protection, Volume 5 (Issue 3)
- Piper, Julia (2007). "The Case of the Pillow Angel". The Triple Helix Cambridge Michaelmas