Understanding disabilities #1

Epilepsy (types of seizures)

Focal seizures = limited to part of the brain General seizures Absence seizures (petit mal) — unconscious, no convulsions, can't remember it, looks like daydreaming, may lose muscle control and move repeatedly. Tonic-clinic or convulsive seizures (grand mal) — lasts 1-3 mins, can require immediate medical help, stiff muscles, extremities jerk and twitch rhythmically, fatigued, confusion and disorientation after. Atonic - drop and get back up Clonic- lose control of bodily function Tonic- muscle spasm and impaired consciousness Myoclonic — abrupt muscle jerks in all of body

Air Carrier Access Act

When: 1986 What: Prohibits commercial airlines from discriminating against passengers with disabilities. In 2013 all domestic and foreign air carriers needed to have accessible websites and kiosks. 2016 websites needed to be successful. Service animals included in act.

Disability

Any condition of the body or mind that makes it more difficult for the person with the condition to do certain activities and interact with the world around them. - functional limitation with regard to a particular activity

How many people people living with a disability?

15% of world population Over 1 billion experience some type

Traumatic Brain Injury (TBI) (JESSICA MORLEY)

Acquired Brain injury Aneurysm Anoxia and hypoxia Encephalitis or meningitis Insulin shock, liver and kidney disease Stroke Toxic exposure Tumor TBI - fall -collision - gunshot - concussion blast -Head hitting injury -Severe whiplash -Abusive head trauma Diffuse atonal injury = broken axon can't heal Glial cells Injury classification — Mild = goes away in 30 mins. Amnesia less than 24 hours Temp. Or per. Mental or neurological change Moderate = coma more than 20-30 min. But less than 24hr. Possible skull fracture (bruising and bleeding) EEG, CAT, MRI... some long term problems in one or more areas of life Severe = coma more than 24hr. Low on coma scale, bruising and bleeding in brain, scans needed, long term impairments See PowerPoint for the rest

Wheelchair etiquette

Ask permission — ask the person if they would like assistance before providing help. Be respectful — wheelchair should be treated like part of the users body Speak directly — don't exclude user from discussion. Speak directly to the use (sit if conversation is lasting more than a few minutes. Don't pat them on the head Give Clear directions — provide distance, weather, and physical obstacles Act naturally — you can use common phrases like "running along" user probably says the same thing because it is the way the language works Wheelchair isn't confinement — they are not always in the chair, when they're not... don't move it away from them Questions are okay — questions can help form the best perception of wheelchair users Some users can walk — they have other means like crutches, braces, and walkers They are not "sick" — variety of reasons for why they use a wheelchair

TBI

Definition: injuries due to a violent blow or jolt to the head Can damage nerve cells and cause bleeding or swelling in the brain Most are treatable, but can impact all parts of life Prevalent: 2.8 million per year Types: Concussions Hemorrhage Edema Contusions Causes Blow to the head Penetration Severe shaking of the head Whiplash Diagnosis Glasgow Coma Scale Imaging tests Intracranial pressure monitor Symptoms Mild = unconscious, headache, fatigue, dizzy, speech probs, memory issues, depression Moderate/severe = unconscious, vomiting or nausea, convulsions or seizures, dial action of pupils, persistent headache, profound concussion, slurred speech Treatment Mild = rest, pain killers, monitor Immediate emergency care Medication = anti-seizure, coma inducing Surgery Rehabilitation

Multiple Sclerosis (MS)

Definition: involves an immune-mediated process in which an abnormal response of the body's immune system is directed against the central nervous system. The CNS is made up of the brain, spinal cord and optic nerve. Can cause problems with vision, balance, muscle control and other basic body functions Prevalence: 2.8 million worldwide (360 in 100,000 in USA) Types: relapsing remitting MS (bumpy up then stop then up or down) Secondary progressive MS (bumpy all up) Primary progressive MS (straight line) Progressive relapsing MS (bumpy all up) Cause: unknown, but possibly as-yet-unidentified environmental factor Diagnosis between 20-50yrs. 2-3 more common in women Symptoms: heat problems, emotional changes, fatigue, tremors, walking trouble (balance), speech, thinking probs, bladder, eye probs, Treatment: meds, PT, infusion treatments, muscle relaxers

cystic fibrosis (CF)

Definition: is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time Prevalence: more than 30,000 people in the US more than 70,000 worldwide Causes: genetics... one cop of a defective gene from both parents Treatment Airway clearance Inhaled meds Pancreatic enzyme to absorb nutrients Fitness plan

Tourette's

Definition: neurodevelopment disorder that affects children, adolescents and adults. The condition is characterized by sudden, involuntary movements and/or sounds called tics. Tics can range form mild/inconsequential to moderate, to severe and are disability in some cases. Prevalence: 1 in every 160 children (aged 5-17) in the US... 3-4 times more common in boys than in girls. Cause: unknown, but maybe genetics, other factors are possible Tics: stress, excitement or being sick or tired can make them worse Can be simple or complex. SIMPLE = a few body parts COMPLEX = many parts Motor and vocal tics Many with Tourette's have ADHD (1/2)

Institutions (dehumanizing)

Dehumanizing places — anyone who was unmanageable sent in - what was bad? — little staff, poor food and little time to eat, people hosed down, no fresh clothes, most naked, bodily fluids all over floors and people, sanitation not priority, disease rampant Not intentionally bad, just understaffed, and workers were not educated, they were underpaid and overwhelmed.

Barriers (communication)

Experienced by people who have disabilities affecting their hearing, speaking, reading, writing, and understanding Visual impairments - print too small - no large version - no Braille for people who need it Auditory impairments - no closed captioning - oral communication without interpretation Cognitive impairments - use of technical language, long sentences, that cause a barrier of understanding

Inclusion

Goes beyond integration and mainstreaming — provides opportunities for a participant to choose to be with their peers in a regular setting and also provides the supports and accommodations needed to ensure personally satisfying and valued participation.

Hearing impairment

Most common health problem in the US (48 million) Causes: Old age, Noise, medications, sudden hearing loss, illness, trauma Types Mild Moderate Severe Profound Diagnosis: Physical exam (earwax or inflammation from infection General screening tests Audiometer tests - audiologist, similar to the beep test at school Deaf vs. deaf

504

Most significant law in US prior to ADA. Provided individuals with disabilities with basic civil rights protection against discrimination in federal programs. States that no individual with disabilities will be excluded from participation in, be decided the benefits of or be subjected to discrimination or activity receiving federal assistance.

Film shown (We Can Shine)

Part 1: listens to a few people's stories from their time in the Willowbrook institution. (Were beaten, naked, unsanitary, abused, undernourished) Families thought this was the best treatment since the government was running the operations. (Didn't know about the poor treatment) Discussion: Part 2: A mother gave birth to a child with Down syndrome, her and her child were separated from the rest of the maternity ward and put in an alternate location; hospital provided less care and treatment was not of the same quality. Hospital said that the child was imperfect (parents did not agree. Discussion: there is always a grieving process because not getting the child expected. Parents should always celebrate the child they get.

accessibility

People with disabilities right of access to entities

Barriers (attitudinal)

Stereotyping Stigma Discrimination — feeling sorry for people Inferiority — because impaired in one function... believed to be 2nd class citizens Pity — feel sorry for Hero-worship — special because they are doing what everyone else is doing Ignorance Fear — afraid to do or say the wrong thing (or how to interact) Ex's. Think of some Other info: unlike physical and systematic barriers, attitudinal barriers often lead to illegal discrimination cannot be overcome simply through laws. The best remedy is familiarity, getting people with and without disabilities to mingle as coworkers, associates, and social acquaintances. In time, attitudes will give way to comfort, respect, and friendship.

Barriers (physical)

Structural obstructions in natural or manmade environment that prevent or block mobility or access. Ex. Steps, curbs, hills and ramps, equipment in medical offices that do not accommodate wheelchair users.

Voting accessibility

When: 1984 What: Promoting the fundamental right to vote by improving access for handicapped and elderly individuals to registration facilities and polling places for Federal elections by requiring access too polling places used in federal elections and available registration and voting aids such as instructions in large type. — Required that all polling facilities must be accessible to all individuals with disabilities. The act states that I'd "no accessible location is available to serve as a polling place; voters must provide an alternate means of voting on Election Day. Additional Info: 1. Each state must provide accessibility to registration and voting aids for person with disabilities. 2. Ballots in large font 3. Must have access to aids including telecommunication devices for the deaf (TDD) to accommodate the voting process.

Assistive Technology Act

When: 1988 and reauthorized in 1994, 1998 and 2004 What: Intended to promote people's awareness of, and access to, assistive technology (AT) divides and services,. The Act seeks to provide AT to persons with disabilities, so they can more fully participate in education employment, and daily activities on a level playing field with other members of their communities. The Act covers people with disabilities of all ages, all disabilities, in all environments (early intervention, k-12, post-secondary, vocational rehabilitation, community living, aging services, etc)

ADA

When: July 26, 1990 Who: George Bush What: referred to as the 20th century emancipation proclamation for individuals with disabilities Purpose was to extend civil rights protections, and guarantees equal opportunities for individuals with disabilities in employment, public accommodations, transportation, state and local government services, and telecommunications. Intended to eliminate discrimination against people with disabilities in all aspects of American life.

Rosa's Law

When: October 5, 2010 Who: Obama What: named after Rosa Marcellino... removes "mental retardation" and "mentally retarded" from federal health, education and labor policy. Replaced with "idividual with an intellectual disability" and "intellectual disability"

Abelism

A set of beliefs or practices that devalue a nod discriminate against people with physical, intellectual, or psychiatric disabilities and often rest on the assumption that disabled people need to be "fixed" in one form or the other

Typical

An individual not having a disability Usual, typical, or expected Not the best word to use...

Barriers (transportation)

Are due to a lack of adequate transportation that interferes with a person's ability to be independent and to function in society. Ex. Lack of access to accessible or convenient transportation for people who are not able to drive because of vision or cognitive impairments. - public transportation may be unavailable or at inconvenient distances or locations.

Autism (Suzette and Sam)

Autism and ADHD, has a specialized interest in math and science and memory. Diagnosed with the MCHAT (@ 34 months) Did ABA, IC Ewing speech clinic Sensory seeking/avoidant Self-advocacy, listening/answering, learning to check in on others, look at others, emotions, context, food sensitivities, Take Home message: disability can lead to super-ability

IDEA

Began as Education for All Handicapped Children Act in 1975 then developed into IDEA. Purpose 1. Provide free and appropriate public education (FAPE) to children with disabilities. 2. Requires schools to find and evaluate students at no cost to parents and then provide them with special education and related services to meet their needs. Goal is to help students make progress in school 3. Give parents a voice in their child's education — Parents must give consent before services are provided, parents must have a say in the plan Who Qualifies? A child's issues fall within the IDEAs 13 categories — autism, deaf-blindness, deafness, emotional disturbance, hearing impairment, intellectual disability, multiple disabilities, orthopedic impairment, other health impairment, specific learning disability, speech or language impairment, traumatic brain injury, visual impairment Student must need special education Under age 3 — early intervention services Then IEP

Cerebral palsy (causes) (diagnosis) (characteristics) (supports)

Causes Don't always know Most are born with it (congenital=born acquired=gotten) Sometime related to... Bleeding in the brain while in womb or after birth Lack of blood flow to important organs ir oxygen to the brain Seizures at birth or in first month Some genetic conditions TBI Viruses or infections during pregnancy Diagnosis Tests like — MRI, ultrasound, lab tests, vision tests, hearing tests, speech tests Characteristics Variations in muscle tone Reflexes exaggerated Tremors or involuntary movements Motor skill delays Difficulty eating Precise motion problems Seizures Supports Pediatric neurology Orthopedic surgeon Therapies like PT, OT, SLP, developmental therapist, mental health specialist, recreational therapist, social worker, special ed. teacher Medications

Person First terminology

What's the point — to speak appropriately and respectfully Emphasize the person Emphasizes abilities Gives dignity and confidence to grow Words are powerful Positive language promotes inclusion How to use it — See if it is needed Use positive words (not a victim) Refer to scientific disability when needed Don't say impaired Don't imply restriction Don't categorize

cerebral palsy (CP)

Def: a group of disorders that affect balance, movement and muscle tone "Cerebral" = brain "palsy" = weakness or muscle problem Happens when the part of the brain that controls the ability to move does not develop as it should or is damaged around the time of birth or very early life Prevalence — 1 in 323 (most common motor disability in childhood)

Epilepsy

Definition: A disease of the brain characterized by unprovoked seizures that can affect a variety of mental and physical functions. Prevalence: 2.2 million in the USA Diagnosis: doctor, EEG, CAT, MRI 1 on 1,000 have sudden death

ADHD

Definition: ADHD is a disorder that makes it difficult for a person to pay attention and control impulsive behaviors behaviors. He or she may also be restless and almost constantly active. Prevalence: 6.4 million children have ever been diagnosed with ADHD Causes: genes, smoking/alcohol in pregnancy, lead/environmental toxins, low birth weight, brain injuries Diagnosis: difficulty paying attention (inattention), being overactive (hyperactivity), acting without thinking (impulsivity) Key characteristic: seem not to be paying attention when spoken to directly Treatment: meds, education or training, therapy or a combination of all treatments

visual impairment

Definition: If you're completely blind, you can't see any light or form. Of the peopl with eye disorders, only about 15% can see nothing at all. It you're legally blind, you can still see — just not that clearly Prevalence: an estimated 1.1 million Americans are legally blind Types: sudden total or near total vision loss - when a clot creates a blockage in retinal artery. Can cause temp. blindness for 20-30 mins without treatment can cause permanent blindness. Temporary, partial vision loss - migraines, glaucoma, vasospasm, Eye diseases (glaucoma, cataracts, diabetes, macular degeneration

spina bifida

Definition: a birth defect in which there is incomplete closing of the backbone and membranes around the spinal cord typically in the lower back. The neural tube doesn't close all the way and can cause physical and mental issues. (Happens in the womb) Prevalence: about 1500 to 2000 babies born in the U.S. ever year 90% will live to be adults and live full lives Types Occulta - small gap in the sine, but nerves alright Meningocele - sac of spinal fluid pushes through opening in baby's back, possible symptoms are trouble with bladder or bowels Myelomeningocele - severe, spinal canal is open in one or more places in the lower or middle back, sac of fluid pokes out. Causes - unsure, but maybe environment and family history, or a lack of folic acid in the mother.

William's syndrome

Definition: a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. Also, can have different facial features (small upturned nose, large mouth, full lips, small chin, eyes puffy). Slow weight gain, small and wildly spaced teeth common in William's children. Sensitive hearing, overly friendly and developmental delays or learning challenges. These often occur side by side with striking verbal abilities, high social personalities and an affinity for music. (Caused by Deletion of a specific gene in either sperm or egg) Prevalence: 1 in 10,000 people worldwide, estimated 20,000 to 30,000 in USA It is known to occur equally in both males and females equally and across cultures equally

Intellectual disability

Definition: an impairment characterized by significant limitations in both intellectual functioning and adaptive behavior and characterized by below-average intelligence or mental ability and a lack of skills necessary for day-to-day living. Intellectual functioning: IQ, refers to a person's ability to learn, reason, make decisions, and solve problems Adaptive behavior: skills necessary for day-to-day life, such as being able to communicate effectively, interact with others, and take care of oneself. IQ - less than 70-75 Levels Mild - functional Moderate - self help, and safety skills need to be practiced Severe - lots of supervision (group home) Profound - possible communication (around the clock care) usually other health problems Possible Causes Genetics Problems with pregnancy Childbirth problems Illness or injury Unknown Three factors of diagnosis Interviews with parents Observation of child Testing of intelligence and adaptive behaviors

Autism (general)

Definition: developmental disability that generally begins at birth or within the first three years of life. Prevalence: 1 in 44 (3-4 more common in boys than girls) 1988-1998 610% increase in cases 2009-2017 went from 1.1%-2.5% (DSM changed and allowed for more cases to be diagnosed and combination of multiple disorders combined) Early signs: little lark feature when newborn, not sharing sounds with others, not really talking at 1, not pointing, not showing, not reaching or waving, not many words, not many meaningful phrases, prefer to be alone, few specialized interests, not a fan of change, don't understand feelings, repetitive behaviors, intense reactions Causes: genetic, neurobiological factors, viral infections in mother, hormones, metabolic factors, birth complications, environmental toxins, vaccine theory (not for real) DSM: see PPT (4 was better than 5) Levels: 1 — requiring support 2 — requiring substantial support 3 — requiring very substantial support High functioning = high IQ and social interactions are hard Challenge behavior serves as communication

Institutions (general history)

First institutions: 18th century (actually for criminals b/c disabled were thought of that way) 1848-1869 — mental stimulation began in experimental school in Boston. (Made self-supporting community members) 1888 — 24 state-supported institutions in the USA (funding down = more custodial, became overcrowded) Late 19th century — all disabilities dumped into same institutions Late 19th - early 20th — separate institutions for blind and deaf... "sterilization" 1926 = 23 states had mandatory sterilization laws (50,000 sterilized between 1925 and 1955) 1972 (PA hospital was the first to provide curative treatment, but still keep disabilities from the public)

Deinstitutionalization

From large-scale towards community based facilities Push more more community based Goal was to see people in group homes, halfway houses and the like, or at home! Wanted them to live there with pride BUT this wasn't the case... more expensive care and money did not transfer from institutions Problems 1. Institutionalized not always welcomed back 2. Happened too quickly (no preparation... jobs, recreation, transportation, few services) 3. Nothing for them to do

Institutions (humanization)

Humanization in institutions 20th century — attempts made to improve conditions Treatments were used (shock therapy, lobotomies) Conditions improved because of publicity from Nazi Germany... Parents advocated for their children... time of prosperity, and resources became available... President Kennedy had a sister with a developmental disability Oppression still continued 1950s-60s — movement towards more habilitation (living skill taught), began to hire more/better trained staff, separated by disability, beds provided, patients clothed, showers given, personal things allowed Still in humane in so many ways

Inspiration Porn

When a led people use pictures of disabled people to exclaim how inspirational they are simply for existing, or use it to guilt abled people into trying harder

Cerebral Palsy (EMILY PAPPERMAN)

Independent living philosophy — have the right to do what they want, when they want as best they can (person-first, self-determination, equal rights and access in the community 3 types of CP Growing up with CP Had to try before getting help Self-advocacy early Integrated school with IEP IEP — assistive services and school services for medical and academic needs Went to college Purchasing a wheelchair Prescription, referral, and letter of justification (PT or insurance)

Intrinsic and extrinsic barriers

Intrinsic — A person's own physical, psychological or cognitive limitations Real barriers that are usually permanent but sometimes temporary Reduce a person's ability to be involved in a normative society. Extrinsic — Environmental barriers Things external to people with disabilities that impose limitations upon them

Barriers (programmatic)

Limit the effective delivery of a public health or healthcare program for people with different types of impairments. (Scheduling, lack of accessible equipment, little or no communication with patients or participants, Provider's attitudes knowledge and understanding of people with disabilities.

Attitude change (three ways)

Personal Interaction — Most effective way, must be positive, mutual and reciprocal interaction. Must occur naturally Persuasive communication — speak highly and don't make them seem less Try saying:"people with disabilities hace the same wants and desires as anyone else" or "people with disabilities are just like anyone else" Assumption of disability — role play for a small amount of time. Gives someone the feel of the disability. Can help, but is not the most effective

Impairment

Referring to the actual diagnosis (can be found in the DSM)

self-fulling prophecies

Refers to a belief or expectation that an individual holds about a future event that manifests because the individual holds it.

handicap

Refers to the environmental factor preventing the filling of a normal life role... relationship between person and their environment Three types Environmental — something that is concrete; ramp, elevator Attitudinal barrier — others feel like they can't do it just because they have an impairment Opportunity handicap — no accommodations so person can't do something they wanted to

Barriers (policy)

Related to a lack of awareness or enforcement of existing laws and regulations that require programs and activities be accessible to people with disabilities. (Just because there's a law, doesn't mean it's enforced) Ex. Not allowing/providing services for disabled to participate in governmentally funding services. Denying access due to physical barriers. Denying reasonable accommodations for qualified individuals to work at a particular job that they've applied to and been hired.

Barriers (social)

Related to conditions in which the people were born, grow, live, learn, work, and age — or social determinants of health — that can contribute to decreased functioning among people with disabilities. Ex. Less likely to be employed...35.5% of people with disabilities, ages 18-64, were employed, while 76.5% of people without disabilities were employed - more likely to have an income of less than $15,000 when compared to those without a disability. - children with disabilities are 4 times more likely to experience violence than children without.

Assumption of disability

Role playing, can give students a taste. Flawed because it is an exercise and give inaccurate perception. Should be a last resort. Discussion needed after the experience to be effective.

cerebral palsy (types)

Spastic CP — Most common — muscles stiffen, tighten or spasm Spastic diplegia (stiff muscles =hard to walk) Spastic hemiplegia (one side affected... can cause seizures and speech problems) Spastic quadriplegia (all limbs, body, and face... can create seizures and trouble speaking.most serious kind) Dyskinetic CP — Muscle tone too tight or too loose. Uncontrolled movements (slow twisting or quick jerking) Face affected (frown, drool or trouble speaking) Ataxic CP — Very rare Problems with coordination (can make unsteady when walking) can also cause shaking (hard to do tasks like writing) Mixed CP — Combination of multiple types (mostly spastic and dyskinetic)

Integration/mainstreaming

The process that consists of both the physical presence of people with disabilities in settings where people without disabilities are typically present and participation in social interactions and relationships between people with and without disabilities in typical settings.

Learned Helplessness

a general belief that one is incapable of accomplishing tasks and has little or no control of the environment