It’s Not Always the Way it SeemsAn Introduction to Individuals with Developmental

Disabilities

Kathy Biddlestone, RN, BSN, CDDNbiddlestone.kathleen@cuyahogabdd.orgCuyahoga County Board of Developmental DisabilitiesAugust 13, 2012

"Things are not always what they seem; the first appearance deceives many; the intelligence of a few perceives what has been carefully hidden.“ Phaedrus

•

ObjectivesDifferentiate between the terms Intellectual Disability and

Developmental Disability (I/DD)

Identify 5 specialized care needs of individuals with I/DD

Identify 5 challenges that meeting the disaster planning needs

of individuals with I/DD.

Escape/Rescue involves:

• Walking• Running• Driving• Seeing• Hearing• Quickly responding to directions

What is a Disability?

• Expression of limitations in an individual’s function within a social context which represents a substantial disadvantage to the individual– Physical: CP; Para/Quadriplegia; CVA; Amputees– Cognitive: TBI; CVA; I/DD– Mental: Mental illness– Sensory: Visual/Hearing– Emotional; PTSD; separation/abandonment issues– Developmental: Down syndrome; Autism; CP– Or some combination of these.

Current Terminology

• Intellectual/Developmental Disability

Often abbreviated

IDD or DD

Disability is not, “One Size Fits All”

Individuals who happen to have a disability arepart of our world’s

“Just Like Us”

facs.pppst.com

facs.pppst.com

What’s In a Name?The Evolution of the Terminology over 200 years

– Idiocy– Feeblemindedness– Mental deficiency– Mental disability– Mental handicap– Mental Retardation– Developmental Disabilities– Intellectual Disabilities

Rosa’s Law

• Oct. 5, 2010 President Obama signed into law, a bill which removed the term mental retardation and replaced it with intellectual disability

• Ohio adopted the change July 7, 2009

Only the name has changed…

• The term ID covers the same population of individuals previously diagnosed with Mental Retardation

• Every individual who is or was eligible for a diagnosis of mental retardation is eligible for a diagnosis of intellectual/developmental disability

Why is this Important?

• Essential role of the term Mental Retardation as it relates to public policy

IDEA (2004) Individuals with Disabilities ActSocial Security DisabilityInsuranceMedicaid Home and Community Based WaiversCitizenship and Legal StatusEarly intervention and EducationCivil and Criminal JusticeTraining and EmploymentIncome SupportHealth CareHousing and ZoningFEMA

So, just who are we talking about?

• 19.3 % of the 257.2 million people representing the general population of the US

• 49,639,600• Depending on who you ask!

Intellectual Disability

•Intellectual disability is characterized by significant limitations both in intellectual functioning and in adaptive behavior which covers many everyday social and practical skills.

Intellectual Disability

• Originates before age 18.• Adaptive behavior is expressed in conceptual,

social and practical adaptive skills.• Limitations are considered within the typical

environments of the person’s age peers and culture.

• Assessments consider cultural and linguistic diversity as well as differences in communication, sensory, motor and behavioral factors.

• Within an individual, limitations often coexist with strengths

IDD

Class IQ

Profound mental retardation Below 20

Severe mental retardation 20–34

Moderate mental retardation 35–49

Mild mental retardation 50–69

Borderline intellectual functioning 70–84

Developmental Disability

A severe, chronic disability

Manifested before the age of 22

Likely to continue indefinitely;

WHICH results in substantial functional limitations in three or more of the following areas of major life activity:

Self-care

Receptive and expressive language

Learning

Mobility

Self-direction

Capacity of independent living

Economic self-sufficiency

Examples of Developmental Disabilities

EpilepsyAutism and autism spectrum disorders

Fetal Alcoholism SyndromeLead Poisoning

Intellectual disabilityCerebral palsy

Down syndromePrader-Willi Syndrome

Hearing /Vision Impairments Cystic Fibrosis

• All people with an intellectual disability have a developmental disability however, not all people with a developmental disability have an intellectual disability.

Specialized Care Needs

Need for medical treatments/medications that they may not be able to perform independently.

which may lead to the need for a caregiver with specialized and often individual specific training

Swallowing/Feeding Concerns

• Particularly in individuals with Cerebral Palsy and Down’s syndrome with dementia

Adaptive Eating Equipment

• Nosy Cup • Bendable Fork

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Adaptive Eating Equipment

• Velcro utensil • Scoop Plate

•expressmedsupplies.com maddak.com

Tube Feedings

• Providing nutrition, hydration and medication through a tube inserted into the stomach or small intestine

www.oralcancer.org

Specialized Medical Needs

Medications

Glucometer use/Insulin Administration

• Diabetes management often requires blood sugar testing, using a glucometer.

• It may also require management with oral medication and/or injected insulin.

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Respiratory Issues Use of devices to provide inhaled

medications

• Nebulizer • Inhalers

www.natural-holistic-health.com

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Tracheostomy

• tracheostomy is a surgical procedure to create an opening through the neck into the trachea (windpipe). A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs

www.bmedesign.engr.wisc.edu

• OXYGEN • CPAP

http://www.zorotools.comalignmap.com

Seizures

• Triggers• Protection from harm• Medications

– Diastat– Intranasal Versed– Sublingual medications

Equipment Needs

SpecializedCustomizedNot often readily available

Speech/LanguageModalitiesAugmentative Speech

Schedule

students.depaul.edu

Picture Board

•http://www.autism-community.com/communication/strategies-and-solutions/

Speech/LanguageModalitiesAugmentative Speech

• Springboard

•lausd.k12.ca.uslog.friendshipcircle.org

IPAD

Physical Mobility

• Reverse Walker• Gait Trainer

Lifting/Transferring

• Gait Belt • Hydraulic Lift

Power Mobility

• Reclining Power Chair • Scooter

•hmebc.com •bestmedicalsuppliesonsale.com

Wheelchair Seating/Positioning

Sensory Issues

• Particularly in individuals with Autism or Autism Spectrum Disorders

• difficulty filtering sensory input.

• nervous systems do not know what to block out and what to amplify.

• Lights• Noises• Faces• Touch• Smells• Textures

Other Equipment Resources

• Home Health Care Agencies• Home Health Departments of retail

stores/pharmacies• Hospices• Hospital supply companies• Mobility companies

Additional challenges

• Inappropriate referrals to medical facilities, resulting in increased burden to already under-resourced facilities.

• Misidentification of disability as an acute medical condition.

• Refusal to serve based on mislabeled conditions

Our mission is to support and empower people with developmental disabilities to live,

learn, work and play in the community.

CCBDD Services

Early Childhood Services & Supports School-Age Services & Supports Adult Services & Supports Family Support Program Community & Medicaid Services Support Administration Behavioral & Healthcare Services Assistive Technology Transportation Quality Assurance