Introduction to Developmental Disabilities and Disability Etiquette

1. Introduction to Developmental Disabilities and Disability Etiquette

2. What is a Developmental Disability? A developmental disability is a severe and long lasting disability which: • Is the result of a mental or physical impairment • Occurs before the age of 22 • Is permanent • Means the person needs special supports (such as the supports we provide at Emmaus)

3. What is a Developmental Disability? (Continued) It limits the person’s abilities in at least 3 of these 7 adaptive skills areas: • Taking care of him or herself • Making decisions • Making a living • Living alone • Learning • Communication • Mobility

4. A Closer Look at Adaptive SkillsTaking care of him or herself When someone has limitations in this area the person may need help with: • Bathing • Tooth brushing • Dressing • Using the restroom • Eating • Other activities of daily living

5. Making Decisions A person with limitation in this area will have problems using good judgment which may impact the following areas: • Health issues: eating, exercising, deciding when to bathe, etc. • Safety issues: what to do in an emergency, opening the door to strangers, what to say to telemarketers, etc. • Difficulty expressing personal preferences.

6. Making a living Most people with developmental disabilities are mildly challenged, and are therefore often able to work in the community. Emmaus primarily serves people with greater challenges who are typically not able to support themselves with competitive employment. These individuals may work in sheltered workshops or may attend a day habilitation programs during the day. Others may volunteer in the community or not have any organized day activities.

7. Living alone The people we support need help to take care of their daily needs. There are many different ways to provide the oversight a person needs to be healthy & safe. Here are a few: • 24 hour protective oversight (Staff person is with the individual, awake 24 hours a day) • Awake oversight with a sleeping overnight staff for emergencies. • The person is able to spend some time alone, without staff support. (These typically cover most individual’s situations when Emmaus is providing the supports)

8. Learning Almost all people with developmental disabilities struggle with learning, and find academic skills such as reading, writing, or math particularly difficult. Sometimes this means the person will take longer to learn a concept, or at other times that this concept is not something he or she can grasp. Traditional classrooms are rarely the best way for people with developmental disabilities to learn. Real life experience usually works best, such as actually handling money to learn to count it. Sometimes the person needs other sensory input in order to be able to focus and learn. Everyone can learn! We all learn and grow every day, including people with developmental disabilities!

9. Communication Many of the people we support cannot talk, or cannot express themselves clearly with verbal language. Some use alternative forms of communication such as electronic devices, language cards, or sign language. It is important to be creative and figure out what works best for the person. Behavior (good or bad) is a form of communication. Smiling, laughing, or winking may be a way of someone telling us s/he is pleased with the activity being presented. Yelling, hitting him/herself, or grimacing may be a way of someone telling us they are upset or something is hurting.

10. Mobility Limitations in mobility may mean that a person uses supports like: • A walker • A wheelchair • A gait belt (this will be discuss further in lifting safety) • A lift device

11. What does all this mean? Developmental disability is a general term used to diagnosis people with disabilities. This diagnostic term encompasses many other more specific diagnoses. For example, mental retardation is the most common type of developmental disability. Currently in Social Work we use the term Intellectual Disability.

12. What are some other Developmental Disabilities? • Autism • Cerebral palsy • Mental Retardation • Head Injury • Epilepsy (Must also have deficits in 3 of the 7 adaptive skills areas to be considered a developmental disability, as mentioned earlier.)

13. Mental Retardation/Intellectual Disability As mentioned, mental retardation (or intellectual disability) is a developmental disability. Most of the people Emmaus supports have this diagnosis. Because this is at the heart of what we do, let’s take a closer look at MR or ID …

14. What is the Official Definition of Mental Retardation? Mental retardation is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18

15. What do I need to know? • Someone with this diagnosis would have scored below the 70-75 range on and IQ test (average is 100). • The person could have difficulty learning, taking care of him/herself, communicating, or other activities of daily living. • The condition is usual present from birth or early infancy, but could be developed prior to 18 years of age.

16. So a Person is Retarded? AAID (American Association for Intellectual Disabilities) states that mental retardation: • Is not something you have such as blue eyes or brown hair. • It is not something you are such as short or tall. • It is not a medical disorder or a mental disorder. • It reflects the ‘fit’ between a person’s capabilities and the expectation of the person’s environment.

17. Causes of Mental Retardation A lot of times we just don’t know! But here are some causes we are aware of: • Genetic conditions such as Down Syndrome, Fragile X, or PKU. • Problems during pregnancy such as fetal alcohol syndrome or infections like rubella during the pregnancy. • Problems at birth such as the baby not getting enough oxygen during delivery or trauma to the brain. • Health problems such as whooping cough, measles or meningitis. • Lead poisoning or mercury exposure. • Malnutrition • Sensory deprivation and environmental restrictions (prolonged isolation or severe neglect) • Physical abuse

18. Working with People with Mental Retardation The definitions and other information in this presentation are good but there are things no diagnosis can tell you. Such as: • In what areas does this person need support? • What kind of help does s/he need and how does s/he like for that help to be presented? • What is the person interested in (hobbies, community activities, favorite TV show or movie)? • What activities does s/he like doing at home or in the community? • How does s/he communicate to me and how can I best communicate to her/him?

19. How do I find out those answers? • Get to know the person! Spend time with him/her. • Read the person’s Individual Support Plan. • Talk to people who know the person well. • Ask questions.

20. Getting to know the person is more important than knowing the diagnosis!

21. Getting to Know People with DD You get to know people with developmental disabilities the same way you get to know other people in your life. Spend time with them. Understand how they communicate. Do things you enjoy together. Because communication can be a challenge for some people, that may mean you need to learn a bit more about different ways to communicate than you have to with others in your life – but everyone communicates once you can just see how!

22. What is Considered Respectful Communication? The way we talk about people lets others know what you think about them. We are ambassadors for people with disabilities and we must convey our respect and support in our speech at all times. To speak respectfully about people with disabilities, we must understand the principle behind person-first language.

23. Person-First Language This is based on the belief that people with disabilities are not broken, victims, or need fixing. They are just people (moms, dads, brothers, sisters, aunts, uncles) who happen to have a condition commonly referred to as a disability. In order to focus on the person more than the disability, when referring to people with disabilities we always mention the person first and then the disability. In fact, we only mention the disability at all if it is needed in the conversation.

24. People with Disabilities not Disabled People As you can see in the above title, changing the way we speak about people with disabilities by speaking of the person first, helps to keep our thoughts on the fact we work with PEOPLE and then disability. The disability may cause an individual to need more assistance in one or more areas of life, but we are here to assist and support people – not disabilities.

25. Practical Examples • I work with people who have disabilities. • Rather than: I work with disabled people. • Kate has autism. • Rather than: Kate is autistic. (No one wants to be defined by a diagnosis, whether it be disability related or cancer or whatever!) • Blake has Down’s Syndrome. • Rather than: Blake is Down’s. Or, A Down’s person. She has a learning disability. • Rather than: She’s learning disabled or A learning disabled person.

26. Headline News: Always Right?Wrong! The news media is not a good way to brush up on your person-first language. They typically use outdated language and disrespectful terms to describe people with disabilities. It is not uncommon for the news to refer to people with disabilities as: • Pitiful • Unfortunate • A victim of disability Don’t follow their example!

27. Sticks and Stones….The Power of Words “The words used to describe a person have a powerful impact on the person’s self-image. For generations, the hearts and minds of people with disabilities have been crushed by negative, stereotypical words which create harmful. . . detrimental consequences.” Kathie Snow “People First Language, www.disabilityisnatural.com”

28. Past and Present It is important to note that in the past it was common to use terms to refer to people with disabilities that would be considered disrespectful today. For example, Emmaus Homes used to be: Emmaus Homes for the Epileptic and Feeble Minded. As we continue to improve our understanding of disabilities and improve our communication skills, we should be encouraging everyone in the field to use the most current and updated language.

29. Words with Dignity

30. More Words with Dignity…

31. Don’t Say It! The following terms are disrespectful and inappropriate. In other words, don’t use these words!

32. What can I do? The following are a few things to keep in mind when working with the people we serve: • Make reference to the person first, then the disability. Say, “Bob who has Down’s Syndrome” rather than “A Down’s Syndrome guy name Bob.” • If the disability has no bearing on the conversation, don’t mention it. There is no reason to say “Suzy, the woman who has Prader Willi, and I went to the movies today.” • Offer your assistance rather than forcing it on someone. Insist only when health or safety is at stake.

33. More Things I Can Do! • Do not lean on a person’s wheelchair. A wheelchair is an extension of the person’s body. Leaning on it would be the same as slinging your arm around a friend’s shoulder and hanging there for twenty minutes. • When speaking to a person who uses a wheelchair for more than a few minutes get into a position where you are at eye level with the person. • Speak directly to the person rather than through a companion. Give them the respect of speaking directly to them, even if they use a companion or interpreter to answer you.

34. Wrapping It Up If you have further questions regarding developmental disabilities, mental retardation or disability communication and etiquette please contact someone in training or your Support Coordinator!