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, e.g., assistance with personal hygiene)
  • 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).

Causes Of Developmental Disability


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 injury or infection before, during or after birth.
  • Growth or nutrition problems.
  • Abnormalities of chromosomes and genes.
  • Birth long before the expected birth date – also called extreme prematurity.
  • Poor diet and health care.
  • Drug misuse during pregnancy, including alcohol intake and smoking.
  • Child abuse, which can severely affect a child’s socio-emotional development.
  • An autism spectrum 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.

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. 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 specific diagnoses (such as Freeman-Sheldon syndrome) do not impact on life expectancy.

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)
  • 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 diagnosis are more easily given than with the general population that has less consistent monitoring.
  • Access to health care providers: in the USA, 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.

Developmental Disability


Developmental disability is a term used in the United States to describe life-long, disabilities attributable to mental and/or physical impairments, manifested prior to age 18. The term is used most commonly in the United States to refer to disabilities affecting 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

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, “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.

Frequently, 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 Spectrum Disorder are described as having developmental disabilities. This use of the term is synonymous with the use of the term learning difficulty 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, which may be lifelong.

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, throughout the world, to increase their capacity for self-advocacy, teaching the skills necessary for people to advocate for their own needs

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 focused on increasing independence.

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

Challenging behaviour


Some people with developmental disabilities exhibit challenging behaviour, 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 behaviour include self-injurious behaviour (such as hitting, headbutting, biting), aggressive behaviour (such as hitting others, screaming, spitting, kicking), inappropriate sexualised behaviour (such as public masturbation or groping), behaviour directed at property (such as throwing objects and stealing) and stereotyped behaviours (such as repetitive rocking, echolalia or elective incontinence).

Challenging behaviour 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 behaviour is learned and brings rewards and it is very often possible to teach people new behaviours to achieve the same aims.

Experience and research suggests that what professionals call ‘challenging behaviour’ is often a reaction to the challenging environments that those providing services create around people with developmental disabilities. ‘Challenging behaviour’ 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 centred on what suits the service provider and its staff, rather than what best suits the person.

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 Enlightenment 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 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, 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 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.

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 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. Wolfensberger 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.

From the 1960s to the present, most states have moved towards the elimination of segregated institutions. Along with the work Wolfensberger and others including Gunnar and Rosemary Dybwad, a number of scandalous revelations around the horrific conditions within state institutions created public outrage led to change to a more community-based method of providing services. 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, although the debate over whether or not to close institutions persists in some states, including Massachusetts.

It could be argued that we still have a very long way to go before people with such disabilities are seen as full citizens of society. Person Centred Planning and Person Centred Approaches are seen as methods of addressing the continued labelling 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.

My Personal Opinion On The Way People Look At Individuals With Disabilites


We as a Society have a habit of looking at Individuals who are different from ourselves as “not normal”, who are we to define who or what is considered “normal”?

We all have some sort of disability, whether it be we talk to fast or to slow, maybe we have troubles hearing things, writing, or maybe the way we interact with others etc.

I personally view all individuals as unique and it may only be my opinion but I feel that if we judge everyone that is different from what we consider to be “normal” when will that judgment turn back on ourselves?

Being an advocate for individuals with disabilities is a very rewarding task, for someone who has no one to stand up for them or just needs someone else to help, and advocate can have a positive impact on the lives of those whom they help.

I was given the opportunity to be an advocate for someone with severe mental disabilities and i was more than willing to be there for her every step of the way. The individual i was an advocate for could not speak so she voiced what she wanted through sign language (she did not know sign language so between her and myself, we developed signs so that she could communicate with me) and i fought for everything she wanted. Her wants and dreams to many of us might have been small but to her they were her whole life. All she wanted was the right to go swimming or to the movies etc, basically she wanted the right to live, and after many of months of fighting the community as well as her family, we achieved her goals and dreams! Today she is happy, i check on her every now and then and she still communicates with me in her own specials way. Her parents have also informed me that she is in better shape than she has ever been and they have never seen her smile so much!

Just knowing that i helped an individual with disabilities achieve her wants and dreams (however little we might see them), that is a big enough reward for me…

The next time you see someone who needs help, whether they have a disability or not, ask them if you can lend a hand. Watch the smile that comes across that individuals face. Just knowing that someone is willing to lend a hand, and that someone out there cares, can improve someone’s life in ways that are without words.

Evoloution Of A Movement


Historically, disabilities have often been cast in a negative light. An individual thus affected was seen as being a “patient” subject either to cure or to ongoing medical care. His/her condition is seen as disabling; the social reactions to it are justified, and the barriers unavoidable. This position is known as the medical model of disability.

Over the past 20 years, a competing view known as the social model of disability has come to the fore. In this model, disability is seen more as a social construction than a medical reality. An individual may be impaired by a condition that requires daily living adaptations, but the bulk of his problem – his/her disability – can be found in the attitudinal and physical barriers erected by society.

Both the medical and social models agree, to a point, that facilities and opportunities should be made as accessible as possible to individuals who require adaptations. Dismantling physical barriers, or setting up adaptations such as wheelchair ramps, is known as “fostering accessibility”.

Disability advocates speak out in support of Avery Ottenbreit


I read this article on Canada.com and I wanted to share it with you because it is just another example of how more of us need to be more understanding and compasionate towards others that have a disability of any kind. This article was very touching and I believe that many out there will appreciate it for what it has to offer.

One day after Avery Ottenbreit’s return to the Queen City, disability advocates in Saskatchewan spoke out in support of the Regina teenager.

The 15-year-old quadriplegic’s trip home from Ottawa was delayed because of WestJet’s refusal to allow her to fly using her personal comfort harness.

Michael Richter, the executive director of the South Saskatchewan Independent Living Centre, was upset that WestJet delayed Avery’s trip because the airline deemed the harness unsafe for air travel.

“I would go as far to say that Avery’s harness would definitely be considered a personal disability aid,” Richter said Friday. “The denial of its use could be considered discriminatory under the Charter of Rights and Freedoms.

“WestJet contends that it was a safety issue for her to be flying, but if the plane was going down I think the last worry on other passengers’ minds would be that the disabled girl’s seat might be dangerous. Meanwhile, the airline serves alcohol on its flights knowing full well that some passengers might require a cab when the plane has landed.”

Faith Bodnar, the executive director for the Saskatchewan Association for Community Living, echoed Richter’s feelings.

“I think that by making this decision, WestJet needs to realize that this is a human rights issue with her rights to travel and they have a duty to accommodate her,” said Bodnar. “Unless they want to recognize her rights as any Canadian citizen to travel and the duty to accommodate her, they risk having these kinds of things taken through the courts.”

WestJet officials were unavailable for comment.

Avery and her family hope that the whole ordeal will serve as a lightning rod to spark the debate for accessibility in airplanes for people with disabilities.

“Before Avery left Ottawa she briefly talked to Steven Fletcher,” Randy Ottenbreit, Avery’s father, said in reference to the quadriplegic MP of Charleswood-St. James-Assiniboia in Manitoba.

“One of the things he said to her was, ‘Don’t worry, you will fly again.’ ”

Because she was barred from flying on a commercial flight, Avery was flown home on an air ambulance paid for by WestJet. It arrived in the early hours of Friday morning, ending a long day of stressful waiting by Avery in Ottawa.

At home, Avery was just happy to be back in her parents care. Her ordeal was one that would be dreaded by any seasoned traveller, let alone one with cerebral palsy flying by herself for the first time.

Avery had been in Ottawa since June 27 at an Active Living Alliance conference for Youth with Disabilities. Avery had flown on an airplane before she travelled to Ottawa, but on this trip she was unaccompanied by her parents.

When Avery travels she uses a harness to hold herself up in her seat to stay comfortable because she has no control of the trunk of her body.

Avery was able to fly to Ottawa using the harness, but on the return trip she encountered an obstacle that proved incredibly troublesome.

When WestJet deemed the harness unsafe for air travel and refused to let her fly home on its commercial flight, Avery was left in Ottawa with only her travelling companion, Nicole Butlin, for company.

As a precocious young woman, Avery was very upset at being left behind and not being able to see her parents.

On Friday, at home, she was brought to tears at the mere thought of her frightening experience.

“I just wanted to come home,” she said. “In Ottawa we did rock climbing and tubing, but after that I wanted to see my parents.”