What are intellectual and developmental disabilities?

Intellectual disability and developmental disability are disability categories that are used to describe groups of people with physical and mental differences. Developmental disability usually means a lifelong physical and/or cognitive disability that impacts functioning in major life activities. For example, a developmental disability might make it harder for someone to care for themselves, communicate, learn, move around, or live on their own. Intellectual disability is a type of developmental disability that impacts intellectual functioning and everyday living skills.

The category intellectual and developmental disabilities describes a group of over 7 million people in the United States who have an intellectual disability, developmental disability, or both. Some common developmental disabilities are autism spectrum disorder, Down syndrome, cerebral palsy, Fragile X syndrome, and many others. Sometimes the letters ‘IDD’ are used to mean intellectual and developmental disabilities. Some doctors used to use the r-word to describe people with intellectual disabilities. We feel this word is outdated and hurtful and should not be used anymore. Some people with intellectual and developmental disabilities use the word disability to talk about who they are. Some people with intellectual and developmental disabilities prefer to describe themselves as self-advocates or as having different abilities. Some people use person–first language, for example, identifying as a person with a disability. Some people use identity-first language, for example, identifying as a disabled person. The best way to describe someone is to use the words that the person wants you to use. We believe that people should be able to define for themselves how they are identified, instead of being labeled by someone else.

Definitions

Here are some examples of some official definitions of intellectual and developmental disabilities.

We understand that these definitions are used by a lot of people. Our point-of-view is that these definitions are too medical and are not the definitions we like to use.

Supports and Services

Many adults with intellectual and developmental disabilities need support with some activities of daily living such as personal care, community participation, employment, medical care, or finances. When people get the supports and services they need, they can live meaningful lives included in their communities. Some people with intellectual and developmental disabilities need support in many areas of their everyday lives, and some people need support with a few things here or there. All people can learn and grow, and can also change as they get older. Many people with intellectual and developmental disabilities need less support as they learn new things. They might need more support as they get older or if they get sick.

Some people with intellectual and developmental disabilities feel they are getting too much help and should be allowed to be more independent. Sometimes caregivers are too overprotective and restrictive and don’t let us have control in our own lives. For other people with intellectual and developmental disabilities, sometimes we do not get enough support or the right support and we are struggling. If you have low expectations of someone or you control their life, you will hold them back from reaching their true potential. You should not make judgements based on labels or appearances. Not all disabilities can be seen and you should not make assumptions about what we can and cannot do. We think it is important to focus on people’s strengths and interests. The supports we receive should be based on what each person with intellectual and developmental disabilities wants and needs. Everyone should support access to communication, and pay attention when people communicate, so that people can set and reach for their own goals.

Everyone has strengths and everyone has goals and areas to grow. If we need supports and services in life, we want them to be based on who we are as an individual. No matter how much support we need, we should have opportunities to speak up for ourselves and control how we live our lives. In this guidebook we take a positive approach to talking about people with intellectual and developmental disabilities. That means we talk about what people can do and how they can be supported to reach their own goals in life.