What I Wish I Knew a Year Ago About Developmental Disabilities

Developmental Disabilities

Developmental disabilities are a diverse group of chronic conditions that are due to mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay. The most common developmental disabilities are:

• Motor disorders
• learning difficulties
• Dyslexia
• Tourette's syndrome, dyspraxia, dysgraphia
• Irlen Syndrome
• dyscalculia.

Autism and Asperger syndrome are a series of conditions called autistic spectrum disorders that causes difficulties in communications. Autism spectrum disorders affect speech, understanding body language, social interactions, difficulty in understanding others in areas such as sarcasm and other's feelings, and causes repetitive behaviors known as stimming.

Down syndrome is a genetic condition in which people are born with an extra copy of chromosome 21. This extra copy affects the development of the body and brain, causing a range of physical and mental impairments for the individual.

Fragile X syndrome, most frequent among boys, is thought to cause autism and intellectual disability.

Pervasive developmental disorders are a group of developmental disabilities that can cause significant social, communication and behavioral challenges.

Fetal alcohol spectrum disorders are a group of conditions caused prior to birth that can occur in a person whose mother drank alcohol during pregnancy.

Cerebral palsy is a group of disorders that affect a person's ability to move and maintain balance and posture. They are the most common motor disability in childhood.

Intellectual disability, also (sometimes proscriptively) known as mental retardation, is defined as an IQ below 70, along with limitations in adaptive functioning and onset before the age of 18 years.

Attention Deficit Hyperactivity Disorder, often called ADHD, is a neurodevelopmental disorder characterized by executive dysfunction. It has effects on attention span, cognition, self-control, and emotional regulation.

Causes

The causes of developmental disabilities are varied and remain unknown in a large proportion of cases. Even in cases of known etiology, the line between "cause" and "effect" is not always clear, leading to difficulty in categorizing causes.Genetic factors have long been implicated in causing developmental disabilities. These conditions are also believed to have a large environmental component, and the relative contributions of nature versus nurture have been debated for decades.Preterm birth is known to be a predictor for potential developmental disabilities later in childhood, which complicates the question of nature versus nurture, as premature birth could already have resulted from earlier and longer existing difficulties.

Second, being born at such an immature gestation could immediately have damaged the main organs (lungs and brain) or, third, such damage could arise in the neonatal period, for instance from the necessary intrusive treatment. Furthermore, exhaustion resulting from adaptation or stress could damage or disturb development. In addition, the highly stimulating hospital environment and the lack of social interactive experiences with the mother or the abundant interaction with others could add to the risk. In short, many reasons are conceivable that by itself or in different combinations could result in developmental problems of very preterm children.

Current theories on causation focus on genetic factors; more than 1,000 known genetic conditions include developmental disabilities as a symptom.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%. Such disabilities are 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.

Diagnosis and quantification

Developmental disabilities can be initially suspected when a child does not reach expected child development stages. Subsequently, a differential diagnosis may be used to diagnose an underlying disease, which may include a physical examination and genetic tests.

The degree of disability can be quantified by assigning a developmental age to a person, who may be classified by age group resulting from their test scores. This, in turn, can be used to calculate a developmental quotient (DQ) as follows: DQ={{developmental age] / {Chronological Age]] * 100

Associated issues

Physical health issues 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. 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. Society has advanced in its adaptive and medical technologies, and other methods to help people lead healthier, more fulfilling lives. In addition, some conditions (such as Freeman–Sheldon syndrome) do not affect 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 and developmental 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 behavior, inability of those around to allow/understand expressions of grief and other human emotions)
• External monitoring factor: all federal- or state-funded residences are required 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 United States, all federal- or state-funded residences require the residents to have annual visits to various health care providers. 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.
• Post-Traumatic Stress Disorder

Risks and Development

Individuals with developmental disabilities have an increased risk of developing post-traumatic stress disorder compared to the general population due to heightened vulnerability to negative life experiences, including: Interpersonal trauma Abuse Dependence on caregivers Lack of autonomy Diminished social support Harassment

Stigma and prejudice Post-traumatic stress disorder is a psychological disorder that can develop after experiencing or witnessing trauma and is characterized by negative thoughts, memories, or dreams about the trauma, avoidance of reminders of the trauma, adverse changes in thinking and mood, and heightened acute stress response. Post-traumatic stress disorder often goes undiagnosed among individuals with developmental disabilities due to providers' and caregivers' lack of understanding and differences in communication ability.Individuals with developmental disabilities may develop more intense symptoms of post-traumatic stress disorder when compared to the general population due to maladaptive coping and neurological differences. These symptoms may manifest differently depending on the severity of the disability; post-traumatic stress disorder may present as challenging behaviors such as aggression and self-harm, and communication of symptoms may be limited by verbal ability. Mental health problems are often reported by proxy rather than self-report, which can increase the risk of underreporting and of psychological symptoms going undiagnosed.Psychological Treatment

Diagnosis, assessment, and treatment approaches for post-traumatic stress disorder typically require verbal communication and insight into cognitions, emotions, and functioning. Individual differences in communication and intellectual ability among individuals with developmental, and particularly intellectual disabilities can limit identification and treatment of post-traumatic stress disorder symptoms. Thus, diagnosis and treatment approaches should be modified to fit the individual.Some individuals with developmental disabilities may have difficulty understanding and articulating negative thought processes and emotions associated with traumatic events. Metaphors, simplified explanations, and explicit examples may help elucidate symptoms of post-traumatic stress disorder and improve understanding of treatment approaches. Frequent prompting, repetition of explanations, and developing detailed timelines of life events may also improve focus and engagement in psychological treatment. Providers should clearly understand individual needs and abilities and ensure that expectations for treatment are consistent with individual abilities and functioning.The following trauma-specific treatments have demonstrated efficacy among individuals with developmental disabilities, particularly when tailored to individual needs and presentation.Child-Parent Psychotherapy

Child-parent psychotherapy is a relational treatment that focuses on improving child-parent relationships and functioning following a young child's exposure to one or more traumatic experiences. This treatment is designed to enhance the attachment relationships between children between the ages of zero and five and their caregivers, eliciting a sense of safety and improving emotional regulation and behavior. Children with developmental disabilities have a higher risk of exposure to traumatic events than children within the general population. Child-parent psychotherapy can accommodate non-verbal communication, making it a good fit for children with a wide range of abilities. Child-parent psychotherapy has been demonstrated to reduce symptoms of post-traumatic stress disorder in children with developmental disabilities and may help enhance caregivers' understanding of their children's disabilities and individual needs. Two 2014 case studies demonstrated the efficacy of child-parent psychotherapy with two children who were exposed to traumatic events. One of the children was 14 months with global developmental delays, and the other was six with autism spectrum disorder. At the time of this study, most studies that evaluated the efficacy of child-parent psychotherapy did not include any information about children with autism or intellectual disabilities. Both children and their families had about one year of weekly therapy, and both saw improvements in attachment relations, decreased trauma symptoms, and overall improvements in functioning.Exposure Therapy

Exposure-based therapies are among the most common treatments for post-traumatic stress disorder. Exposure therapy involves exposing a patient to a source of stress (such as a memory or reminder of a traumatic event) to increase tolerance to feared stimuli, overcome avoidance, and gradually reduce acute stress response symptoms of post-traumatic stress. Exposure therapy should be carefully tailored to the individual when treating individuals with developmental disabilities to reduce the risk of re-traumatization. There is preliminary evidence that exposure therapy paired with relaxation techniques, cognitive restructuring, and problem-solving can reduce symptoms of post-traumatic stress disorder among individuals with developmental disabilities. In a 2009 case study, a 24-year-old woman with an intellectual disability experienced a reduction in posttraumatic stress disorder symptoms following nine exposure therapy sessions. The therapists used a shield analogy, in which they encouraged the client to envision newly learned relaxation techniques and coping statements as a shield protecting her. They used modified exposure to reduce the risk of re-traumatizing the client; she imagined her nightmares and flashbacks rather than the trauma itself.Trauma Focused Cognitive Behavioral Therapy

Trauma focused cognitive behavioral therapy is a short-term treatment that focuses on reducing and changing negative and unhelpful thought processes related to traumatic experiences and processing and managing associated negative emotions. Differences in language and thinking can make cognitive-based interventions challenging for individuals with developmental, and particularly intellectual, disabilities. Still, there is evidence that trauma focused cognitive behavioral therapy can be adapted using metaphors and simplified examples to be accessible and beneficial for individuals with mild intellectual disabilities. In a 2016 case study, therapists used a metaphor to describe post-traumatic stress disorder and aid treatment for a young man diagnosed with an intellectual disability and autism spectrum disorder. They explained his symptoms by describing his brain as a kitchen cupboard and his traumatic memories as tins that had not been organized properly, and therefore kept falling out. The young man had a significant improvement in mood and symptoms after 12 sessions of adapted trauma focused cognitive behavioral therapy.Eye-Movement Desensitization and Reprocessing

Eye-movement desensitization and reprocessing is a psychological treatment in which the patient's stress is reduced by associating traumatic experiences with bilateral stimulation such as rapid, rhythmic eye movements or tapping. Eye-movement desensitization is demonstrated to be highly effective at reducing symptoms of post-traumatic stress disorder across individuals with varying severity of intellectual disabilities; it has the most evidence for treating individuals with developmental disabilities based on numerous case studies. Eye-movement desensitization can be adapted for individuals with limited language abilities, making it accessible to a wide range of developmental disabilities.

Abuse and vulnerability

Abuse is a significant issue for people with developmental disabilities. They are regarded as a 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 is associated with psychological disturbance. Sequeira, Howlin, & Hollins found that sexual abuse was associated with increased rates of mental illness and behavioral problems, including symptoms of post-traumatic stress. Psychological reactions to abuse were similar to those observed in the general population, but with the addition of stereotypical behavior. The more serious the abuse, the more severe the symptoms that were reported.
• Psychological or emotional abuse (verbal abuse, shaming and belittling)
• Constraint and restrictive practices (such as 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, and shelter)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. A study on the association between different types of childhood maltreatment and the risk of criminal recidivism has also shown that physical neglect during childhood plays a critical role in the repeated crime, independent of mental-health problems for high-risk adults involved with the criminal justice system.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. Failings in care have been identified in one in eight deaths of people with learning difficulties under NHS England.

Challenging behavior

Some people with developmental disabilities (particularly Autism) 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, shouting, 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, echolalia or elective incontinence). Such behaviors can be assessed to suggest areas of further improvement, using assessment tools such as the Nisonger Child Behavior Rating Form (NCBRF).

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. Challenging behavior in people with developmental disabilities can often be associated with specific mental health problems.Experience and research suggest 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 the 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. This method is controversial according to the Autistic Self Advocacy Network, saying that this type of therapy can lead to the development of Post Traumatic Stress Disorder and worsening of symptoms later in life.

Societal attitudes

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 village idiot, and potentially harmful characterizations (such as demonic possession for people with epilepsy) were prominent in social attitudes of the time.

Early in the twentieth century, the eugenics movement became popular throughout the world. This led to the forced sterilization and prohibition of marriage for those with developmental disabilities in most of the developed world and was later used by Hitler as rationale for the mass murder of intellectually disabled individuals during the Holocaust. The eugenics movement was later thought 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 those with developmental disabilities 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. In the United States, 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 lawsuits 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 U.S. 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 Centered 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, 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.

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 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. 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)

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, 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 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.

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 Schools. The type of residential accommodation is usually determined by the level of developmental disability and mental health needs.

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 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 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.

Though efforts are being made to integrate individuals with developmental disabilities into the workforce, businesses are still reluctant to employ individuals with IDD because of their poor communication skills and emotional intelligence. High functioning individuals with developmental disabilities can find it difficult to work in an environment that requires teamwork and direct communication due to their lack of social awareness. Working with employers to better understand the disorders and barriers that may come from the struggles associated with them, can greatly impact the quality of life for these individuals.

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, 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.

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.

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.

Programs are set up around the country in hopes to educate individuals with and without developmental disabilities. Studies have been done testing specific scenarios on how what is the most beneficial way to educate people. Interventions are a great way to educate people, but also the most time-consuming. With the busy schedules that everybody has, it is found to be difficult to go about the intervention approach. Another scenario that was found to be not as beneficial, but more realistic in the time sense was Psychoeducational approach. They focus on informing people on what abuse is, how to spot abuse, and what to do when spotted. Individuals with developmental disabilities don't only need the support programs to keep them safe, but everybody in society needs to be aware of what is happening and how to help everybody prosper.



See also

American Coalition of Citizens with Disabilities Behavioral cusp Disability abuse List of disability rights activists List of disability rights organizations

References

• Carey, William B.; Crocker, Allen C.; Elias, Ellen Roy; Feldman, Heidi M.; Coleman, William L. (April 28, 2009). Developmental-behavioral pediatrics (4 ed.). Elsevier: RELX Group. ISBN 9780323809726.
• Gray, Barry; Jackson, Robin, eds. (2002). Advocacy and learning disability. London: Jessica Kingsley. ISBN 1-281-32552-X. OCLC 1193378085. Archived from the original on 11 August 2020.
• Levine, Melvin D; Carey, William B.; Crocker, Allen C. (1999). Developmental-behavioral pediatrics (3 ed.). Philadelphia: W. B. Saunders. ISBN 0721671543. LCCN 98012901. Archived from the original on 19 May 2020.
US Administration on Developmental Disabilities fact sheet
• Goode, David. (December 1998). A History of the Treatment of Persons with Mental Retardation. AHRC. New York. Archived August 5, 2016, at the Wayback Machine.
• 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 Archived 2009-09-27 at the Wayback Machine
• The American Bar Association's paper Invisible Victims: Violence against persons with developmental disabilities
• Endicott, Orville (1991). Persons with intellectual disability who are incarcerated for criminal offences: A literature review (PDF). Communications and Corporate Development, Research Branch.: Correctional Service of Canada. Archived from the original (PDF) on 1 July 2013. Retrieved 30 June 2022.
• Jones, Jessica (December 2007). "Persons with intellectual disabilities in the criminal justice system: Review of issues". International Journal of Offender Therapy and Comparative Criminology. Sage. 51 (6): 723–733. doi:10.1177/0306624X07299343. eISSN 1552-6933. ISSN 0306-624X. PMID 17636203. S2CID 27995011.
• Søndenaa, Erik; Linaker, Olav Martin; Nøttestad, Jim Aage (September 2009). "Effects of the changes in legislation governing offenders with intellectual disabilities in Norway: A descriptive study". Journal of Policy and Practice in Intellectual Disabilities. International Association for the Scientific Study of Intellectual Disabilities. 6 (3): 229–235. doi:10.1111/j.1741-1130.2009.00206.x. ISSN 1741-1130.
• Byzek, Julie. (January 1998). 'Fighting to keep 'em in', Ragged Edge magazine
• Wishart, G. D. (2003). "The sexual abuse of people with learning difficulties: do we need a social model approach to vulnerability?" The Journal of Adult Protection, Vol. 5 No. 3, pp. 14–27. Emerald Publishing Limited. ISSN 1466-8203 DOI 10.1108/14668203200300021
• Piper, Julia. (Michaelmas 2007). "The Case of the Pillow Angel". Science in Society Review. University of Cambridge The Triple Helix.

Why Special Needs Isn't What You Think It Is

Special Needs

In clinical diagnostic and functional development, special needs (or additional needs) refers to individuals who require assistance for disabilities that may be medical, mental, or psychological. Guidelines for clinical diagnosis are given in both the Diagnostic and Statistical Manual of Mental Disorders and the International Classification of Diseases 9th edition. Special needs can range from people with autism, Asperger syndrome, cerebral palsy, Down syndrome, dyslexia, dyscalculia, dyspraxia, dysgraphia, blindness, deafness, ADHD, and cystic fibrosis. They can also include cleft lips and missing limbs. The types of special needs vary in severity, and a student with a special need is classified as being a severe case when the student's IQ is between 20 and 35. These students typically need assistance in school, and have different services provided for them to succeed in a different setting.In the United Kingdom, special needs usually refers to special needs within an educational context. This is also referred to as special educational needs (SEN) or special educational needs and disabilities (SEND). In the United States, 19.4 percent of all children under the age of 18 (14,233,174 children) had special health care needs as of 2018.The term is seen as a dysphemism by many disability rights advocates and is deprecated by a number of style guides (e.g. APA style).

U.S. special needs and adoption statistics

In the United States "special needs" is a legal term applying in foster care, derived from the language in the Adoption and Safe Families Act of 1997. It is a diagnosis used to classify children as needing "more" services than those children without special needs who are in the foster care system. It is a diagnosis based on behavior, childhood and family history, and is usually made by a health care professional. More than 150,000 children with special needs in the US have been waiting for permanent homes. Traditionally, children with special needs have been considered harder to place for adoption than other children, but experience has shown that many children with special needs can be placed successfully with families who want them. The Adoption and Safe Families Act of 1997 (P.L. 105–89) has focused more attention on finding homes for children with special needs and making sure they receive the post-adoption services they need. Pre-adoption services are also of critical importance to ensure that adoptive parents are well prepared and equipped with the necessary resources for a successful adoption. The United States Congress enacted the law to ensure that children in foster care who cannot be reunited with their birth parents are freed for adoption and placed with permanent families as quickly as possible. The disruption rate for special needs adoption is found to be somewhere between ten and sixteen percent. A 1989 study performed by Richard Barth and Marianne Berry found that of the adoptive parents that disrupted, 86% said they would likely or definitely adopt again. 50% said that they would adopt the same child, given a greater awareness of what the adoption of special needs children requires. Also, within disrupted special needs adoption cases, parents often said that they were not aware of the child's history or the severity of the child's issues before the adoption. There is also more care that goes into it when a child of special needs is in the process of getting adopted. Because of the Adoption Assistance and Child Welfare Act of 1980 P.L. 96-272, the child's needs have to be met within the home before allowing adoption, including being able to financially support the child.

Education

The term Special Needs is a short form of Special Education Needs and is a way to refer to students with disabilities, in which their learning may be altered or delayed compared to other students. The term Special Needs in the education setting comes into play whenever a child's education program is officially altered from what would normally be provided to students through an Individual Education Plan which is sometimes referred to as an Individual Program plan. Special Education aids to the students learning environment, to create a uniform system for all children.In the past, individuals with disabilities were often shunned or kept in isolation in mental hospitals or institutions. In many countries, disabled people were seen as an embarrassment to society, often facing punishments of torture and even execution. In the US, after the creation of the Individuals with Disabilities Education Act and many other regulations, students with disabilities could not be excluded or discriminated against in the education system.

Integrated learning environments

In many cases, the integration of special needs students into general-learning classrooms has had many benefits. A study done by Douglas Marston tested the effects of an integrated learning environment on the academic success of students with special needs. He first gathered students in from three different categories: those in isolated learning environments, those in integrated learning environments, and those in a combination of both isolated and integrated learning environments. He calculated the average number of words read by each group in the fall and again in the spring, and compared the outcome. The findings showed that those in integrated learning environments or a combination of isolated and integrated environments experienced greater improvements in their reading skills than those in strictly isolated environments.Integrated classrooms can also have many social benefits on students with special needs. By surrounding special needs students with their fully functioning peers, they are exposed to diversity. Their close contact with other students will allow them to develop friendships and improve interpersonal skills.

Special Needs and Education Worldwide

The integration of children with special needs into school systems is an issue that is being addressed worldwide. In Europe, the number of students with special needs in regular classrooms is rising more and more while the number of those in segregated exclusive special needs classrooms is declining. However, in other countries such as China, educational opportunities for those with disabilities have been a longstanding issue. Certain cultural beliefs and ideologies have prevented the integration of all students regardless of ability, yet in recent years, China has progressed significantly by allocating more funding to programs to support disabled people and striving to create more inclusive communities within schools.

See also

References External links Carney, Maedi Tanham (2020). "Statistics: Reasons for Special Needs Financial Plans". M&L Special Needs Planning LLC. Washington DC. Retrieved 30 June 2022. Private company

What is a DCW?

What is a Direct Care Worker?

Have you heard of the term "Direct Care Worker" or "DCW" but are not sure as to what a DCW is or what they do? We'll go over what a DCW is, what their day to day might look like, and how to become certified as a direct care worker in the State of Arizona, working through DDD/DES.

DCWs, or caregivers, are individuals who provide direct care for a patient, individual or person that needs some form of companionship and provide assistance with Activities of Daily Living, or otherwise any type of physical support or aid. In this particular instance, we will be discussing what a DCW does within the scope of working though DDD.

Many times you will find that there may be someone in your area needing help or care. The unique role and scope of a caregiver is that the schedule and times may be more flexible, or unusual, in the sense that most of the scheduling or needs revolve around an individual. Often times you will be in communication with the families and the agencies, coordinating what times your are available or other times families want a set schedule. Regardless, anyone can take on any shift to supplement their income, occupy their time, give back to the community, or gain some insight and experience into this rewarding field!

What does a DCW Do?

    DCWs have a wide range and scope in terms of job duties, but it all revolves around direct care or attending directly to an individual or group of individuals. Depending on the nature of care or service provided, the DCW may work at an individual's home, providing supervision, assisting with activities of daily living, such as laundry, cleaning, transferring, or other tasks that individuals typically would do on a daily basis. A Direct care worker may also provide habilitation(HAH) services, which consists of teaching or assisting someone in developing independent living skills.

In-Home Services

    In an in-home setting, the assignment may revolve around assisting one individual or a group of individuals that are siblings or related to each other. Respite(RSP) services may have a DCW providing supervision, ensuring the individual is not left unattended, or companionship, in the sense of being there for them, taking them out into the community and or ensuring they are fed and cared for during the stay. Attendant Care(ATC) services are in place to ensure safe and sanitary living conditions for the individual in care and may consist of a combination of Personal Care and Housekeeping. A caregiver's assignment may be one or a combination of any of those services.

DTA/DTT/DTS Services

Aside from in-home services, a DCW may also work within a facility. Residential facilities include Group Homes and ADH homes, individuals live in those facilities full-time and are cared for around the clock by caregivers. Another form of facility care is in what is called a DTA and/or DTT. The DTAs or Day Training for Adults is typically a facility where adults will attend on a daily basis to do a variety of activities to increase quality of life for the participants. DTT and/or DTS programs or Day Training and Treatment/Day Training and Treatment-Summer programs are in place as after school programs for children to attend after school.

    ITC West DTA located in Glendale, AZ

Who can become a DCW?

Anyone that gets the required certifications can provide Direct Care services. Though there are are a few limitations, families and friends can provide services for their loved ones. Typically, you will have to be 18 or older in Arizona in order for most agencies to consider you for employment. Once certified, this will make the employment process a lot easier and one can begin working providing direct care as needed. Agencies must ensure that the worker is familiarized and aware of the level of care the patient needs, to ensure they know what they are doing. Places like ITC will educate, orient and allow you to choose what hours you want to work, and who you want to work with, Direct Care Work is truly a unique type of job.

 Anyone can become a DCW. No schooling or degree is required, however, a few certifications are mandatory to begin working.

Currently the state of Arizona has approved guardians to be able to provide services and get reimbursed for caring for their own children, if you qualify for services or already have DDD services, now is a great time to take advantage of this opportunity!

What are the requirements?

To get started, particularly at ITC, you need your two forms of ID, a direct deposit form and a few certifications, employment can begin as soon as 24 hours! Aside from the two forms, a few certifications are required, particularly, a Level 1 Fingerprint Clearance Card, CPR and First Aid Certification and Article 9 Certification. Though there are more certifications available for more specific caregiving scopes, such as Prevention and Support and DCW: Principles of Caregiving, those 3 are the most important and required to start working.

Check out our other post on what a fingerprint clearance card:

How to obtain a Level 1 Fingerprint Clearance Card and FAQS

and a step by step tutorial on how to obtain one:

Fingerprint Clearance Card Application Process Infographic

There are several places in the valley that can provide CPR and First Aid Certification, as well as Article 9 Certification. You can always call ITC West to find out when one of our free Article 9 courses will be available. Call us at 623 792 8112.

Want more information, or want to start working? Call us today at 623 792 8112 for more information or stop by our west valley office on 9105 N 57th Dr. Glendale, AZ 85302 to get started. There are always families looking for help.

ITC West Valley Application

SpokeChoice Help Tutorial

Not sure how to use SpokeChoice? Are you curious about EVV? Are you experiencing issues? Here is an infographic that answers a few questions about SpokeChoice, provides some information about what EVV(Electronic Visit Verification) is and some Frequently Asked Questions(FAQs) about its usage:

How to obtain a Level 1 Fingerprint Clearance Card and FAQs

Have you applied, or are you applying to a job requiring a NON-IVP or Level 1 Fingerprint Clearance card? Maybe you're unfamiliar as to what it is, the process needed to get one, or are genuinely curious as to what it is. Regardless of the case, here is some information to help you obtain your Card, as well as some frequently asked questions that may answer any questions you may have.

 What exactly is a Fingerprint Clearance Card?

In Arizona, there are a vast amount of jobs that require one form or another of a FPCC(Fingerprint Clearance Card), depending on the nature of the job, and the appropriate agency it falls under. Typically, most jobs that fall under the Department of Child Services(DCS), Department of Economic Security(DES) or Department of Health Services(DHS) as well as other Arizona departments, will require a Level 1 FPCC. This card screens for federal criminal history records, and determines whether they are eligible for clearance or not. Here are the specifics. For the most part, any child abuse, neglect, pending crimes, or warrants will usually result in a denial of Fingerprint Clearance Card. These screenings are crucial to ensure the safety and well being of the vulnerable populations that are being served, as each employee is required to obtain one.

Who needs a Fingerprint Clearance Card?

In the State of Arizona, a wide range of professions require a Fingerprint Clearance Card, varying on the position. Such professions can include:

• Direct Care Workers
• Nurses
• Case Managers
• Personal Care Aids
• Teachers
• Caregivers
• Child or Daycare Workers
• Etc.

Again, depending on the nature of business, and the level of care provided, each agency and employer will require a specific subset or type of clearance. It is best advised to reach out to your prospective employer and ask them exactly what is required if they are not sponsoring your fingerprinting or if you are unsure.

Where or how can I get a Fingerprint Clearance Card?

Though the Fingerprint Division of the Department of Public Safety issues these Cards, there are a variety of ways to obtain one. Initially, an application must be submitted to DPS(Department of Public Safety), this can be done either electronically via the DPS website(click here) paper application Click here for a non-IVP Application Form or you can call DPS directly at (602) 223-2000 with any questions you may have. You will also have to to go to an actual physical location to get fingerprinted as part of the FPCC application process. Once the process has been completed, the clerk that did your fingerprinting will provide an application number, which can be presented to your prospective employer to see if you are able to begin employment. Your physical Card will arrive in the mail a few weeks later after your application has been processed.

How long does the fingerprinting process take?

If you decide on going through the DPS Website you can register your account, input your information, and process the application if you are payment ready.

Do I have to pay or is there a fee to the Card?

DPS charges a $67 to process the application, as well as an $8.25 fee for Gemalto to do the actual fingerprinting and backgrounding. Consult with your prospective employer if they are willing to sponsor, payroll deduct, or take on the fee themselves.

How long is the Card good for?

An FPCC must be renewed every 6 years. However, upon being charged with a disqualifying offense, your fingerprint clearance card will most likely be suspended, or revoked. Depending on the severity of the offense or crime, you may be ineligible for a card until the pending crime or charge has been resolved. If you are found to be eligible for reinstitution, you may have to wait a certain amount of time, or have to apply for a Good Cause Exception. Typically, you will have to submit a request of hearing, as well as reference letters, detailing as to why your card should be reinstated, usually signs or proof of self-improvement and rehabilitation may work in your favor to help you get your Card back. There may be restrictions on your card such as a driving restriction that may make you ineligible for certain professions or for employment in general.

Online Application Steps

First, you must go to the DPS website and create an account(click here). On you have created your account and filled out your information, you must verify your email and login using 2 step verification. 

After you have logged into the website, make sure you follow the appropriate steps for whatever card you are needing. 

If you're applying to become a Direct Care Worker(DCW) or Caregiver to do in-home care such as RSP(Respite), HAH(Habilitation), ATC(Attendant Care), or even to work in a day program such as a DTA(Day Training Adults) or DTT(Discrete Trial Training) you will have to select "DES-DDD/HCBS-Home and Community Based Services ARS§36-594.01 as the reason why you are being fingerprinted. 

You will then be directed to provide the online payment, make sure you are payment ready, as you will not be able to continue with the application without paying. 

Once the initial payment has been made to DPS, you will receive an email in your "Message Center" within the DPS website, make sure you open it and take note of your Application Number, this number will be required to continue with the application and finalize the process. You will then be redirected to the Gemalto Arizona Application Processing website. Make sure to click on the "Click Here if..." box, and proceed with the application. There will be a final $8.25 fee to Gemalto, and once processed, you will see a list of Gemalto Fingerprinting Sites, which can process your application and fingerprint you. This is typically an office suite such as a UPS office or a LiveScan Facility. You will then be fingerprinted, make sure to bring an ID or identification as it will be required to continue. 

Once complete, the technician may prompt you to take a picture of the screen, as it will have your updated Application Number and information that can be submitted to your prospective employer in the mean time while your Card arrives in the mail, which should take a few weeks or so. If you are found ineligible for a fingerprint clearance card, or additional steps are required, you may receive a letter in the mail with instructions on any pending actions that you may have to take to correct, the application, if applicable. 

Below you will find an infographic, listing the steps needed to apply for a FPCC online