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Introduction to Developmental Disabilities
Developmental Disabilities in
Since Ancient times â society has not been kind to people who were âdifferentâ in any way.Any physical difference, in the form of a different ethnicity or a disability, was seen as a mark of inferiority.Aristotle wrote a law that no deformed child shall live." In Rome, children with disabilities were treated as objects of scorn. Children who were blind, deaf, or mentally retarded were thrown in the river by their parents or they were mutilated to increase their value as beggars or were left in the woods to die. It was not unusual for royalty or wealthy families to keep a person with a physical or a mental disability, referred to as a "fool," for their amusement. These were often referred to as âcourt jestersâ.
By the 4th century A.D., the rise of Christianity led to more humane practices toward persons with disabilities. Infanticide (the practice of killing children) ceased and helping "the afflicted" became a sign of strength.But people with disabilities were considered "differentâ and were still excluded from society.The Roman Catholic Church provided refuge to those in need, establishing orphanages, hospitals, and homes for the blind and the aged and those with disabilities.
The Christian EraSlide5
The term âShip of Foolsâ refers to boats that sailed from port to port and charged admission to view their strange human cargo. Eventually, the ships would abandon their "passengers" at another port and they would be forced to fend for themselves.No one understood or knew how to care for someone with a disability. âIdiot cages" were common in towns to "keep people with disabilities out of trouble" and served as entertainment for townspeople.
The Middle AgesSlide6
Early in the 20th century, it was believed that many persons with disabilities could be educated and live in the community and lead productive lives. Optimism for the early "training schools," the increasing awareness of the numbers of persons with disabilities, and reformers such as Dorothea Dix, resulted in an increase in the number of institutions. At this time, the underlying belief was that through proper education and humanitarian means, we could "make the deviant un-deviant" â we could change them to fit better into the world.
While the number of training schools increased, the commitment to training did not. The schools quickly turned into asylums â providing only custodial level care for an increasing number of adults with developmental disabilities. As enrollment increased, the commitment to education was largely abandoned. âPupilsâ became "inmatesâ or patients. Through the 1870s and 1880s, a few institutions continued a policy of admitting persons of a young age who were considered capable of benefiting the most from instruction. But by 1875, a number of states began building custodial institutions.
The Rise of InstitutionsSlide8
The late 19th and first quarter of the 20th century saw the rise and consequences of the Eugenics Movement, which advocated " ... the science of the improvement of the human race by better breeding." So-called "feeblemindedness" was thought to be hereditary and proponents of eugenics, many of whom were doctors, advocated sterilization of persons with disabilities. They believed that if people with disabilities reproduced, they would eventually ruin the human species.Who is the most well-known proponent of Eugenics? Adolf Hitlerâ¦The Aryan race was the master raceâ¦ everyone else should be eliminated.One of the 1st groups targeted by Nazis were people with disabilities. 100,000 children and adults with mental and physical disabilities were exterminated.
Eugenics & DarwinismSlide9
Dissatisfaction with institutions grew as the exposÃ©s of the 1960s made it clear that the institutions were failing to meet even the most basic needs of the people they were intended to serve. The exposÃ©s were capped in 1972 when ABC News reporter Geraldo Rivera visited the Willowbrook State School on Staten Island in New York, the same facility visited by Robert Kennedy in 1965. The program, Willowbrook: The Last Great Disgrace, was seen by millions of viewers.A former doctor at the institution reported that conditions had only become worse since the 1960s.
Advocates for ChangeSlide10
Compulsory public school attendance laws were enacted during the late 19th and early 20th century. As more children attended public schools, teachers noticed more pupils who were "slow and backward." Teachers began to call for persons with special training and for special classes to take care of these students.Even professional publications perpetuated this message. The Almosts: A Study of the Feeble-Minded was a popular textbook. The "Almosts" referred to people with mental retardation as âalmost humanâ.In this atmosphere, families who had a child labeled "feebleminded" were stigmatized as morally bad or genetically flawed. The message given to families was to institutionalize their children or keep them out of sight.
Two books were published in the early 1950s that helped change public perception of mental retardation. Pearl Buck was a famous author and winner of the Pulitzer and Nobel Prizes for her novel The Good Earth. In 1950, she published an article in The Ladies Home Journal entitled, "The Child Who Never Grew," which was later republished in book form. In the article, Buck told the story of her daughter, Carol, who was developmentally delayed due to phenylketonuria (PKU), and whom Buck had placed in New Jersey's Vineland School when she was nine years old. Then Dale Evans, star with her husband Roy Rogers of a hugely popular television show, wrote in Angel Unaware about her daughter Robin, who had Down syndrome and died at age two.
During the 1960s and 1970s, the parents' movement worked to improve conditions in state institutions; create community services, educational and employment opportunities; initiate legislation; and challenge the idea that a person with disabilities could not be helped. After years of treating people with mental retardation and other disabilities with guilt and shame, people began to speak out about their family members with disabilities. This is when the Elizabeth Richardson Center was startedâ¦
There have been gainsMore laws to protect those who have disabilitiesGreater access to housing and employmentMore recognition of how society can support adults and children with disabilitiesPeople with disabilities still face challengesBarriers to employment and independent livingExploitation abuse and neglectIsolation & inability to get to treatment and services
Getting to know
The term developmental disability refers to:
Severe and chronic disability
Attributable to a mental or physical impairment
Begins before an individual reaches the age of 22
Likely to continue indefinitely.
Results in substantial functional limitations in 3 or more of the following major areas of life activity:
Receptive and expressive language
Capacity for independent living
Reflects the individualâs need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.Approximately 3% of the U.S. population has a developmental disability. Developmental disabilities occur in people of all races and economic levels.
The National Center for Birth Defects and Developmental Disabilities estimates that one in
every 33 babies in the United States are born with
a developmental disability
Common Developmental Disabilities:
- Intellectual Disability (a.k.a. M/R)
- Cerebral Palsy
- Seizure Disorder
- Down SyndromeSlide18
Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.Down syndrome is the most commonly occurring chromosomal condition. One in everyÂ 691 babies is born with Down syndrome.There are more than 400,000 people living with Down syndrome in the United States.Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
Autism is defined by the presence of difficulties in three (3) areas with an onset in at least one area by age three : social deficits, communication problems and repetitive or restricted behaviorsAutism now affects 1 in 88 children and 1 in 54 boysThe prevalence of Autism throughout our population is growingMore children will be diagnosed with autism this year than with AIDS, diabetes & cancer combinedAutism is the fastest-growing serious developmental disability in the U.S.Boys are four times more likely than girls to have autismThere is no medical detection or cure for autism
Intelligent quotient (or I.Q.) is below 75Intellectual disability is a term used when there are limits to a personâs ability to learn at an expected level and function in daily life. Levels of intellectual disability vary greatly in children. Children with intellectual disability might have a hard time letting others know their wants and needs, and taking care of themselves. Intellectual disability could cause a child to learn and develop more slowly than other children of the same age. It could take longer for a child with intellectual disability to learn to speak, walk, dress, or eat without help, and they could have trouble learning in school. Previously known as mental retardation
Intellectual disabilities can be caused by a problem that starts any time before a child turns 18 years old or even before birth. It can be caused by injury, disease, or a problem in the brain. For many children, the cause of their intellectual disability is not known. Some of the most common known causes of intellectual disability â like Down syndrome, fetal alcohol syndrome, fragile X syndrome, genetic conditions, birth defects, and infections â happen before birth. Others happen during birth or soon after birth.
Still other causes of intellectual disability do not occur until a child is older; these might include serious head injury, stroke, or certain infectionsThere are many signs of intellectual disability. For example, children with intellectual disability may: â sit up, crawl, or walk later than other children â learn to talk later, or have trouble speaking â find it hard to remember things â have trouble understanding social rules â have trouble seeing the results of their actions â have trouble solving problems
What are some of the stereotypes you grew up with about people with disabilities? Students who went to school with you who were in special ed?You are now a health care professional working with children and adults with developmental disabilities. You cannot let the stereotypes you grew up with cause problems for you as you work to provide services here at ERC.
Persons with disabilities as sick: Those who need to be cured of a dread disease; referred to as patients; in need of professional care in a hospital setting. Persons with disabilities as sub-human organisms: Perceived as "animal-like" or "vegetative," or as "garden varietyâ; treated like animals in institutions; possessing less than full humanity and not deserving of all human rights; referred to as "so-called human beings." Persons with disabilities as menaces to society: People with disabilities are somehow evil and represent a danger to themselves and to society; this perception leads typically to a concern for and measures leading to the destruction, segregation, containment, control, and persecution of persons with developmental disabilities.
Persons with disabilities as objects of pity: Seen as suffering from some condition beyond their control, and not considered accountable for their behavior; viewed with a "there but for the grace of God go I" attitude; low growth expectations are typical consequences of this viewpoint. Persons with disabilities as burdens of charity: Viewed as clients entitled to food, shelter and little else; the disability is often viewed as punishment for sin, and any help rendered is more from contempt than sympathy; this "cold charity" is viewed as draining public resources, and those receiving it are expected to show proper appreciation.Persons with disabilities as holy innocents: Belief that those with disabilities are special children of God, with a special purpose; not capable of doing evil, sometimes viewed as living saints; often viewed as "eternal childrenâ.
There is a big difference
between being a friend,
being a family member
and being paid staff.Slide29
There are acceptable and unacceptable behaviors for all of us throughout life.As staff - it is NOT acceptable to encourage or demonstrate active physical contact with the individuals we serve. We do not hug, kiss, or show physical affection in any way to the individuals we serve.A âside hugâ is OK â shaking hands and âhigh fivesâ are acceptable. This is a workplace and should be treated as such by both staff and clients.
You will be helping people work toward achieving goals, you might be helping people with personal care.It is very important that you understand that there are right and wrong ways to interact whether it is in a teaching environment, helping someone physically, dealing with emotional issues or helping someone through a behavior issue. If you are not sure how to handle a situation â ASK!!!
ACTIVE TREATMENT and
One of the most important contributions to the disabilities movement was the concept of normalization. It began in Denmark in the late 1950s when a group of parents a advocated for better treatment for their children with mental retardation. They put into very simple terms the concept of "normalization." The concept did not refer to making people "normalâ or to change them - but rather to live according to a normal pattern, "making available to [people who are] mentally retarded the patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society." Normalization reflected a lifestyle and one dramatically opposed to that of the institutions.
Things staff can do
Aspects of Normalization includes improving physical appearance in culturally appropriate ways. (For example: Encouraging or providing up-to-date and/or modern hairstyles and clothing). Using appropriate hair care products, wearing stylish clothing (with no rips, holes or stains), which fit correctly and were purchased with the resident present are also important. Sexy or over exposed clothing should be avoided in favor of clean, neat and tidy, and fashionable clothing.Slide34
Encouraging the use of appropriate jewelry and make-up is also a consideration and can include: lipstick, blush, or eye shadow.
Making sure that men either shave regularly or keep facial hair trimmed.
Residents also need to wear their glasses, hearing aids, etc. to get the full sensory experience of their daily activities. Most importantly, the staff needs to be sure that wheelchairs if used are clean and in good repair.Slide35
Improving a resident's skills in self-care is an important aspect of achieving normalization.
This also includes, preparing and eating breakfast, brushing teeth, bathing, etc.
The staff can help by making sure that each client smells and looks their best. (For example: Training programs specifically designed to encourage residents to take care of their own needs as much as possible.Slide36
Improving community integration and participation skills includes involvement in day programs and jobs within the community.
More and more all-day program activities include at least some community exposure in public places.
Visiting new places can be an excellent opportunity to work on improving socially appropriate behavior skills, money management, and interactions that can't be found at home.Slide37
Think about how you liveâ¦
Do you always get up at the same time? Do you sleep in a little later on the weekends?
Do you wear different clothes depending on the weather or where you are going? Do you wear the same clothes to go to a concert as you do when you go shopping?
What about meals? Are they a little less structured on the weekends?
This is part of ânormalizationâ â allowing some flexibility in the daily/weekly routine.Slide38
Where can there be flexibility?
We might wear our older more comfortable clothes (although no holes or stains on cloths are acceptable).
On weekends we might not get dressed in day clothes until after breakfast.
It is important that the staff keep in mind that meal schedules may need to be individually altered to maintain appropriate meal times in accordance with the regulations.
Weekends and nights need to be even more casual and relaxed for the residents.Slide39
An important aspect of being a direct care staff and working with adults and children with developmental delays and disabilities is to ensure that each resident is provided with consistent, quality, active treatment on a daily basis.Slide40
Why have âActive Treatmentâ?
Active treatment - sometimes called developmental programming - is both a concept and a formal procedure with specific parameters and guidelines as specified in the regulations.
Human beings tend to grow and progress in a sequential, orderly, and predictable manner and the rate and direction of development can be influenced by systematic opportunities for learning.Slide41
What is Active Treatment?
Active treatment is the skill-training children and adults receive to help them function as independently as possible.
Active treatment is an organized attempt to reach each resident's fullest functional capacity. Each person has their own rate of development, so the goals which should be set for them depend largely upon the particular developmental skills they already possess and their specific developmental needs.Slide42
Individual Service Plans
Each client will receive an individually tailored program specifically aimed at achieving their own developmental objectives.
This program is referred to as an Individual Service Plan (ISP) in the adult programs.
In the childrenâs program this document is referred to as an IFSP (Individual Family Service Plan).Slide43
Goals and Objectives
Effective training requires the development of specific goals and objectives for each resident.
Goals can include such activities as 'improving self-feeding skills, or improving personal dressing skills, or improving behavioral skills.
Objectives are more specific and detailed. They must be expressed in simple observable and measurable terms so that competent observers can understand what the objectives are and can agree on whether or not they have been met.Slide44
Well written goals & objectives
For example, suggesting that Jane will develop good eating skills is too general and is not an objective expressed in measurable terms. Observers may have different opinions on just what good eating skills are, and how one knows when such good eating skills have been achieved.Slide45
Easy to follow & document
GOAL: To improve self-feeding skills.
OBJECTIVE 1: Jane will set her glass on the table after drinking without spilling in 3 out of 5 trials with verbal prompts to achieve 30% success for 4 consecutive months.
OBJECTIVE 2: John will take his plate to the sink when finished eating 20 out of 30 times with continual guidance for 2 consecutive months.
Objectives need to be included in the resident's individual daily schedule to help achieve consistency.Slide46
Consistent behavior from staff
Always behave in a consistent fashion when working with the developmentally disabled.
Repetition, over and over and over and over the same way and approximate time each day is the easiest and most effective way of learning.Â Set schedules and a lot of consistency help them to feel safe and secure in a world that moves way too fast for them.Â
When implementing a training program also do it at the same time each day and the same way. They learn to expect and anticipate events of the day.ÂSlide47
Everyone on the same page
ERC staff need to be sure that everyone knows the program for each client and uses the same methods each time.Â Â
It doesnât help if only one trainer can get the client to do something.Â Sure that trainer feels good and important
What happens on different days or shifts when that trainer is not there?Â And worse - what when that staff moves on to another job?Slide48
Donât Push or Force a Task
Never! Never! Never! Never! push or force a trainee through a task.Â If they are resistive or this is new for them you can try again later.Â
There is nothing so important that they learn today to warrant making them upset, frustrated, or angry.Â
Also try not say anything negative to them even if they refuse to cooperate with the program.Â Just stop and thank them for any signs of recognition or cooperation at all.Â
Try to make training as fun as possible.Slide49
As an advocate for the developmentally disabled, you must:Stop feeling guilty and insignificant.Stop apologizing for asking a bureaucrat to do a job you are paying him to do.Stop begging for what you are entitled to by law.Not accept these old excuses: "There isn't enough money"; "We need more time.âStop whispering when everyone else is shouting.Not be afraid to complain.Use the power of mass action.
Advocates for ChangeSlide50
Oversee aspects of ERC operationsSlide51
Medicaid (matching $$ with the state) 75%/25%Social Security (SSDI)Federal Tax Code for 501 (c)(3) organizations - we are required to file annual reports with the IRS â not only do we have to complete a regular tax return but we also have to file a form 990 every year.Equal Employment Opportunity (EEO) Fair Labor Standards Act
Workerâs Compensation LawsFML (Family Medical Leave Act)ERISA (Protects those participating in employer benefit programs)OSHA stands for Occupational Safety and Health Administration. It is part of the Dept. of Labor and it was created to assumer safe and healthful working conditions for working men and women by setting and enforcing standards and by providing training, outreach, education and assistance to companies and their employees.
Because ERC is classified as a 501(c)3 non-profit corporation, Each year ERC is required to send a copy of our annual financial audit and a copy of our form 990 to the Arkansas Attorney Generalâs office and to the Arkansas Secretary of Stateâs office to fulfill requirements by the state to stay in compliance with regulations.
IRS â Non-ProfitSlide54
DHS/DDS - Adult Day programs & CDCs â Policies and procedures that affect every aspect of our programming in the CDCs, Waiver & Adult Day Programs.Office of Long Term Care (OLTC) - Policies and procedures that affect all aspects of programming at the ICFs.Department of Education - CDCs - Issues of credentialing, staff training, classroom ratios, procedures, etc. have all been affected by the increasing scrutiny of the AR Dept of Education.Adult Protective ServicesAttorney General â Registration & Fund-raisingArkansas Employment Act
STATE of ARKANSASSlide55
Over the past 5 years, the AR Department of Education has become increasingly involved in the oversight and regulation of the ERC Child Development Centers as they become more concerned about the welfare and education of children birth to 5 years of age.
As an employee of ERC, you have a responsibility to adhere to all ERC policies & procedures in order to protect the individuals we serve - to protect ERC as an organization - as well as protecting yourself, the staff and management team.Slide57
State and Federal Laws Impacting Disabilities
Olmstead Act- affirms the right for individuals with disabilities to live in the least restrictive environmentAmericans with Disabilities Act (ADA)- Prohibits discrimination due to a disability in the workplace, at state and local public activities, at commercial facilities, in transportation, and in telecommunications Freedom of Information Act requires ERC to notify local news outlets whenever our Board of Directors has a meeting at which business will be conducted.Slide59
Legal Rights of Individuals with Disabilities
âERC assures that it will protect
the legal rights of individuals
with developmental disabilities.âSlide60
A person with a disability
- Has the same rights as other human beings,
- Has the right to be treated with dignity and respect
- Has the right to the most appropriate services in the least restrictive setting that will promote the development of a personâs potential to the highest degree possible while assuring the highest level of self dependenceSlide61
It is important to remember that the individual is a HUMAN BEING not a DISABILTY
Remember to focus on the PERSON - not the DISABILITY
Each person is unique and has individual likes, dislikes, preferences, backgrounds, cultural influences, spiritual beliefs and racial or ethnic biases.
Know your professional boundaries
Use âPeople Firstâ languageSlide63
Many adults and children who deal with intellectual and developmental disabilities also have physical disabilities (sight impairment, mobility issues, hearing deficits, etc.)As an staff member, it is important that you know some basic courtesies when interacting with someone who has one or more physical disabilities.
If someone has difficulty with their sight you should NEVER reach out and touch them before you have verbally spoken and let them know you are in the area.You might assume they have heard you approaching â but it is courteous for you to verbally acknowledge them and introduce yourself.
If you are going to be leading someone with a sight impairment, they will need to either put their hand on your shoulder or they will hold on to your arm so they can feel your body movement and anticipate what they need to do next.BE SURE TO KEEP THEM INFORMED â âWe are coming to a curb.â âThere are 3 steps we are going to go up (or down).â
Always be sure that someone with a hearing impairment is aware that you are in the area by standing directly in front of them and making contact. Speak normally - donât exaggerate your mouth movements. If they read lips â they will be able to understand what you are saying.Have a paper & pen handy to write notes.
If someone has a cane or a walker and you are helping them to move around â always position yourself on the side of their weakness. If they have a cane â the cane will be on the side OPPOSITE of their weakness. So if they have a left-side weakness their cane will be in their right hand. You should position yourself to the left to be of assistance.
People First Language
People-First Language emphasizes the person, not the disability.
By placing the person first, the disability is no longer the primary, defining characteristic of an individual, but one of several aspects of the whole person.
People-First Language is an objective way of acknowledging, communicating, and reporting on disabilities. It eliminates generalizations and stereotypes, by focusing on the person rather than the disability.Slide69
People First Language
If you had asthma and someone introduced you as an âasthmatic personâ â is that really who you are? You are just asthma???
What if you broke your leg or sprained your ankle? Do people say âSheâs a broken legâ¦â ?? âSheâs a sprained ankle?â
Of course not. You are MORE than what has happened to your bodyâ¦ and people who have a disability are much more than the disability they live with.Slide70
People First Language
Instead of: âHeâs autisticâ¦â
Say: âHe has autismâ
Instead of: âShe is brain damaged.â
Say: âShe has a brain injuryâ
Instead of: âHeâs a cripple.â
Say: âHe has a physical disability.
Instead of: âHeâs a Downs clientââ¦or âa CP clientâ
Say: â¦ âa client with Down Syndromeâ or âa client with Cerebral PalsyâSlide71
What you should remember
Each person is unique.
Each person has individual needs and should have choices to fit what they want to do. It is one of the reasons ERC made the decision to offer childrenâs services in 5 locations throughout NWA â so they are more convenient for families to receive services closer to home.
If you are working with several clients who all have Down Syndrome â they will each have individual wants and needs and you will have individualized plans for each one of them.Slide72
No Cookie Cutter approach at ERC
Each client you work with is different from every other clientâ¦just like you are different from every other employee. Celebrate and enjoy the differences in the clients you work with. Help them to see themselves as unique and help them to find their individuality and their âvoiceâ.