Introduction to Intellectual/Developmental Disabilities
Intellectual and developmental disabilities (IDD, I/DD) are disorders that are usually present at birth and that have an impact on how a person develops physically, intellectually, and/or emotionally. Many of these conditions affect multiple body parts or systems. Intellectual disability starts any time before a child turns 18 and is characterized by problems with both:
• Intellectual functioning or intelligence, which include the ability to learn, reason, problem solve, and other skills; and
• Adaptive behavior, which includes everyday social and life skills.
The term "developmental disabilities" is a broader category of often lifelong disability that can be intellectual, physical, or both. "IDD" is the term often used to describe situations in which intellectual disability and other disabilities are present. It might be helpful to think about IDDs in terms of the body parts or systems they affect or how they occur. For example:
• Nervous system These disorders affect how the brain, spinal cord, and nervous system function, which can affect intelligence and learning. These conditions can also cause other problems such as behavioral disorders, speech or language difficulties, seizures, and trouble with movement. Cerebral palsy, Down syndrome, Fragile X syndrome, and autism spectrum disorders (ASDs) are examples of IDDs related to problems with the nervous system.
• Sensory system These disorders affect the senses (sight, hearing, touch, taste, and smell) or how the brain processes or interprets information from the senses. Preterm infants and infants exposed to infections may have problems with their eyesight and/or hearing. In addition, being touched or held can be difficult for people with ASDs.
• Metabolism These disorders affect how the body uses food and other materials for energy and growth. For example, how the body breaks down food during digestion is a metabolic process. Problems with these processes can upset the balance of materials available for the body to function properly. Too much of one thing, or too little of another can cause problems with overall body and brain function. Phenylketonuria (PKU) and congenital hypothyroidism are examples of metabolic conditions that can lead to IDDs.
• Degenerative Individuals with degenerative disorders may seem or be normal at birth and may develop normally for a time, but then they begin to lose skills, abilities, and functions because of the condition. In some cases, the problem may not be detected until the child is an adolescent or adult and starts to show signs of loss of function. Some degenerative disorders result from other conditions, such as untreated problems of metabolism.
The important information for you to remember about a person with I/DD is:
• The person with I/DD is a PERSON.
• Every person, including you, needs other people to help out with some things in their life. The people we support may have different needs than you do, but they’re still people.
• Each person has a unique personality, learning style, set of preferences, and set of needs. In order for you to provide each person with individualized services, you need to know the person’s personality, learning style, set of preferences, and set of needs.
• You will develop a therapeutic relationship with the people you support. That means that you will provide services in a professional manner based on what the person needs – not on what you want to get out of it. Although your relationship will be personable and friendly, you also will remember at all times that you are there to support the person. You aren’t there to do things for the person that the person can do themselves. You aren’t there to change a person’s mind. You aren’t there to control the person. You aren’t there to judge the person.
Here's an example: Your car breaks down and you take it to a mechanic to get it fixed. What do you expect from the mechanic?
• You expect the mechanic to treat you like a person, even though you don’t have the same education, understanding, and knowledge about cars as the mechanic has.
• You expect the mechanic to treat you with respect even though the mechanic knows things that you don’t know and can do things that you can’t do.
• You expect the mechanic to listen to what you need, not to just start changing things about your car without talking to you.
• You expect the mechanic to fix those things you agreed upon. It doesn’t matter if the mechanic likes your car. It doesn’t matter if the mechanic thinks your car is too old. It doesn’t matter whether the mechanic likes the color of your car. It doesn’t even matter if the mechanic thinks you should get an upgraded oil change if all you want is the basic one. What matters is that you chose this mechanic to provide you with services and you expect the mechanic to treat you well, to treat you fairly, and to provide good services according to what you want and need.
A mechanic who treats people well, listens to what people need, and provides professional services is a mechanic who is going to do very well. We need to think along those same lines when we provide services. We need to treat people well. We need to listen to what people need. And we need to provide professional services.
Whether you are new to this field or have been doing it for a long time, you need to be willing to ask questions at any time. Don’t hesitate to ask any of our leadership team members any time you have a question about a person’s diagnosis or any other part of the job. Also, if you want to learn more about any specific clinical topic, such as a specific diagnosis or a certain treatment option, talk to Mickala about it. She can incorporate your learning preferences into your Clinical Supervision Plan, including referring you to training opportunities to widen your knowledge about a given topic.