Developmental disabilities

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Developmental disability is a term used to describe severe, life-long disabilities attributable to mental and/or physical impairments, manifested before the age of 22. The term is used most commonly in the United States to refer to disabilities effecting daily functioning in three or more of the following areas:

capacity for independent living
economic self-sufficiency
learning
mobility
receptive and expressive language
self-care
self-direction

Usually people with mental retardation, cerebral palsy, autism spectrum disorder, various genetic and chromosomal disorders such as Down syndrome and Fragile X syndrome, and fetal alcohol syndrome are described as having developmental disabilities. This use of the term is synonymous with the use of the term learning disability in the United Kingdom and intellectual disability in Australia, Europe, Canada and elsewhere. Cognitive disability is also used synonymously in some jurisdictions.

Developmental disabilities are usually classified as severe, profound, moderate or mild, as assessed by the individual's need for supports.

Causes of developmental disabilities

There are many social, environmental and physical causes of developmental disabilities, although for some a definitive cause will never be determined. Common factors causing developmental disabilities include:

Brain injury or infection before, during or after birth
Growth or nutrition problems
Abnormalities of chromosomes and genes
Babies born long before the expected birth date - also called extreme prematurity
Poor diet and health care
Drug misuse during pregnancy, including excessive alcohol intake and smoking.

Developmental disabilities effect 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% [1]. 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 (Valuing People, p. 16).

Associated issues

Physical health issues

There are many physical health 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 recognise ill health. Epilepsy, sensory problems (such as poor vision and hearing), obesity and poor dental health are over-represented in this population [2]. Life expectancy among people with developmental disabilities is estimated at 20 years below average, although this is increasing with advancements in adaptive and medical technologies, and as people are leading healthier, more fulfilling lives [3].

Mental health issues (dual diagnoses)

Mental health 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:

the high likelihood of encountering traumatic events throughout their lifetime (such as abandonment by loved ones, abuse, bullying and harassment)
the social restrictions placed upon people with developmental disabilities (such as lack of education, poverty, limited employment opportunities, limited opportunities for fulfilling relationships, boredom)
biological factors (such as brain injury, epilepsy, illicit and prescribed drug and alcohol misuse)
developmental factors (such as lack of understanding of social norms and appropriate behaviour, inability of those around to allow/ understand expressions of grief and other human emotions)

These problems are exacerbated by difficulties in diagnosis of mental health issues, and in appropriate treatment and medication, as for physical health issues [4] [5].

Abuse and vulnerability

Abuse 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:

Physical abuse (withholding food, hitting, punching, pushing etc)
Neglect (withholding help when required eg assistance with personal hygiene)
Sexual abuse (from inappropriate closeness and touching to the more serious forms of sexual abuse)
Psychological or emotional abuse (verbal abuse, 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)
Legal 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 and self-advocacy skills, lack of understanding of social norms and appropriate behaviour 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 recognised as a significant, if misunderstood problem. Rates of criminal offending 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). [6] [7] [8]

Societal attitudes towards developmental disabilities

Throughout history, people with developmental disabilities have been viewed as incapable and child-like in their capacity for decision-making and development. Until the Enlightenment in Europe, care and asylum was provided by families and the church (in monasteries and other religious communities), focussing on the provision of basic physical needs such as food, shelter and clothing. Stereotypes such as the dimwitted yokel, and potentially harmful characterisations (such as demonic possession for people with epilepsy) were prominent in social attitudes of the time.

The movement towards individualism in the 18th and 19th centuries, and the opportunities afforded by the Industrial Revolution, lead 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 3000 people, although some institutions were home to many more, such as the Philadelphia State Hospital in Pennsylvania which housed 7000 people through the 1960s), many of which were self-sufficient through the labour of the residents. Some of these institutions provided a very basic level of education (such as differentiation between colours 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-individualised, with aberrant behaviour and low levels of economic productivity regarded as a burden to society. Heavy tranquilisation 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.

This 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" [9], drawing on some of the ideas proposed by SG Howe a hundred years earlier. This book posited that society characterises people with disabilities as deviant, sub-human and burdens of charity, resulting in the adoption of that 'deviant' role. He argued that this dehumanisation, 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 recognised 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 lawsuits against governments and an increasing awareness of human rights and self-advocacy also contributed to this process, resulting in the passing in the US of the Civil Rights of Institutionalized Persons Act in 1980.

By the mid-1970s, most governments had committed to de-institutionalisation, 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.

Services and support

Today, support services are provided by government agencies, non-governmental organisations 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 individualised 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).

Education and training

See main article: Special education

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 mainstream 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.

At-home and community support

Many people with developmental disabilities live in the general community, either with family members, 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, shopping 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 recognising 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.

Supports of this type also include assistance to identify and undertake new hobbies or to access community services (such as education), learning appropriate behaviour 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 recognised 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 offers increased choice and self-determination for individuals.

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 labour 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.

Day services

Non-vocational day services are usually known as day centres, and are traditionally segregated services offering training in life skills (such as meal preparation and basic literacy), centre-based activities (such as craft, games and music classes) and external activities (such as day trips). Some more progressive day centres also support people to access vocational training opportunities (such as college courses), and offer individualised outreach services (planning and undertaking activities with the individual, with support offered one-to-one or in small groups).

Traditional day centres 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 focussed on increasing independence.

Advocacy

Advocacy 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 to increase their capacity for self-advocacy, 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, massage, aromatherapy, or drama 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 behaviour support services, such as high-security services for people with high-level, high-risk challenging behaviours
specialist relationships and sex education services

External links

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