Engaging and Understanding Families who have Children with Intellectual and Developmental Disabilities Wayne State University School of Medicine Co-Curricular Disability Home Visiting Training Module Elizabeth A. Janks, LMSW Associate Director of Training & Education
Learner Objectives Understand and use person first language Identify two culturally competent practices Define two possible issues families with children who have disabilities may experience that can result in them not following Physician’s recommendations for treatment
Family Issues-Challenges to Treatment You may have families that have recently found out their child has a disability They may be disappointed, saddened and challenged by how to parent their child. They may feel isolated They may be experiencing marital issues They may have other children that don’t understand the stressors on the parents
Family Issues- Physician’s Role Remember you may be used to delivering this diagnosis, but a family isn’t Be sensitive to their reaction Take the time to present the implications of the diagnosis People often don’t understand the implications the first time because they are nervous or shocked
Physician’s Role -Family Issues If possible meet them in the privacy of your office, or in a room at the clinic or hospital They may appear uncooperative, but usually time helps reduce fears/anxiety The most negative parent can turn into your shining example Give RESOURCES to them, refer to early intervention and therapies PRN!
Poverty and Disability There is a direct correlation between poverty Physician’s Role -Family Issues and disability: family income, assets and educational attainment have a direct impact on a child’s development. 57% of Detroit’s children live in families with incomes below the federal poverty level 19% of Michigan’s children live in families with incomes below the federal poverty level 23% of children nationally live in families living below the federal poverty level
Poverty and Disability Definition of Federal Poverty level In 2017, a family of two adults and two children fell in the “poverty” category if their annual income fell below $24,600 The Annie E. Casey Foundation Children in Poverty Kids Count Data Center APSE-Assistant Secretary for Planning and Evaluation
Poverty and Disability Numerous studies corroborate the correlation between poverty and an increased risk of experiencing a disability Low income families are nearly 50% more likely to have a child w/ a disability or a severe disability than higher income families. Single mother families are more likely to have a child with a disability than 2 parent families
Poverty and Disability Only a small percentage of Detroit’s Early On eligible infants and children receive this evidence based program, which promote quality educational & life outcomes. Detroit has 3530 homeless children with estimates of disability among those children ranging from 40-60% * 2015 State of Homelessness Annual Report 1 in 5 families receives FIP cash assistance in Detroit
Parent with Disabilities 4.1 million or 6.2% parents in the United States have a disability, parenting children under the age of 18. Recognizing when a parent has a disability Supporting parents with disabilities Resource: Through the Looking Glass *Dr. Kaye H. Steven
What is Person-First Language? Person-first language is a way of speaking and referring to people with disabilities that focuses on the individual not the disability. • It emphasizes the person first and their disability second.
Examples of Person First Language Yes No • People with disabilities • Handicapped • Children with developmental • Crippled disabilities • Wheelchair bound • Children with intellectual • Mentally challenged disabilities • Never use the “R” word • Sally has Down syndrome
Communications T echnique • Always assume people understand at least part of what you are saying • If you know you talk fast…slow down • Meeting new people can upset some children and effect their ability to communicate
Communications T echnique • People may gesture or point to objects or take you to what they want • Take time to let them communicate • It is very frustrating not to be understood • People get labeled as “Behavior Problems” when in reality they are frustrated.
Considerations If you are talking with an individual in wheelchair, sit down, kneel, or squat and share at eye level.
Considerations A wheelchair is part of the person’s body space. When it appears that a person needs assistance, ask them. People with physical disabilities are not “confined” to their wheelchairs, never say, “ wheelchair bound.” If a person’s speech is difficult to understand, do not hesitate to ask him/her to repeat.
Communication T echniques: Summary • Ask if the child uses communication technology • People who have significant health, complications, cerebral palsy, and physical disabilities may not have any intellectual disabilities • People with intellectual disabilities, communicate, but it may be difficult to understand them
DSM 5: Autism Spectrum Disorder Autism Spectrum Disorder is characterized by 5 Diagnostic Criteria And can occur with or without intellectual impairment With or without language impairment Associated with an other neurodevelopmental or mental or behavioral disorder With catatonia
The Five Diagnostic Requirements A. Persistent deficits in social communication and social interaction: Children with ASD have a moderate to severe range of communication, socialization, and behavior problems. Deficits in social-emotional reciprocity Deficits in nonverbal communicative behaviors Deficits in developing, maintaining, and understanding relationships
ASD: 5 Diagnostic Requirements B. Restricted, repetitive patterns of behavior, interests or activities diagnosis must meet at least 2 or the 4 criteria Stereotyped or repetitive motor movements: 1. echolalia, lining up toys, flipping objects Insistence on sameness: inflexible adherence to 2. routines, ritualized patterns Highly restricted, fixated interests 3. Hyper-or hyporeactivity to sensory input or 4. unusual interest in sensory aspects of environment
ASD: 5 Diagnostic Requirements C. Symptoms must be present in the early developmental period D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning E. These disturbances are not the result of an intellectual disability- although ID’s and ASD co-occur
Possible Symptoms of Autism Avoid eye contact and demonstrate little interest in the human voice Do not develop typical attachment behavior, a failure to bond Don’t demonstrate normal separation or stranger anxiety Lack of interest in playing with other children May not participate in games that involve imitation Startle easily When speech is developed may present abnormalities – echolalia (seemingly meaningless repetition of words or phrases) may be the only kind of speech some children acquire Resistance to change
Federal Definition: Developmental Disability Is attributable to a mental or physical impairment or combination of mental and physical impairments Is manifested before the person is 22 Is likely to continue indefinitely Results in substantial functional limitation in three or more of the areas of major life activity
Substantial Functional Limitations Self-Care (eating, dressing, bathing) 1. Receptive and expressive language (understanding 2. communication & being able to communicate) Learning (learning new things & being able to apply 3. experiences to new situations) Mobility (fine and gross motor skills) 4. Self-direction (ability to make decisions, protecting 5. one’s self interest) Capacity for independent living-self determination 6. Economic self-sufficiency (getting and keeping a job) 7.
Intellectual Disability T erm used when a person has certain limitations in mental functioning and in skills such as communicating, taking care of him or herself, and social skills. Intellectual Disability is categorized with Developmental Disabilities, person can have both.
Intellectual Disability The ability to learn, think, solve problems, and make sense of the world defines intellectual functioning Whether the person has the skills they need to live independently (adaptive functioning). Physicians, educators, psychologists, social workers, parents can all play a role in diagnosis (team approach) Psychological testing & assessments
Characteristics of an Intellectual Disability Children with an intellectual disability may: Sit up, crawl, or walk later than other children Learn to talk later, or have trouble speaking Find it hard to remember things Not understand how to pay for things Have trouble understanding social rules Have trouble with understanding the consequences of their actions Have trouble solving problems, and/or Have trouble thinking logically.
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