Engaging and Understanding Families who have Children with - - PowerPoint PPT Presentation

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

 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

Learner Objectives

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

• f 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!

Physician’s Role-Family Issues

Poverty and Disability

 There is a direct correlation between poverty

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

 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

Parent with Disabilities

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
• Children with developmental

disabilities

• Children with intellectual

disabilities

• Sally has Down syndrome
• Handicapped
• Crippled
• Wheelchair bound
• Mentally challenged
• Never use the “R” word

• Always assume people understand at least part
• f 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
• bjects 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.

Communications T echnique

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

• B. Restricted, repetitive patterns of behavior,

interests or activities diagnosis must meet at least 2 or the 4 criteria

1.

Stereotyped or repetitive motor movements: echolalia, lining up toys, flipping objects

2.

Insistence on sameness: inflexible adherence to routines, ritualized patterns

3.

Highly restricted, fixated interests

4.

Hyper-or hyporeactivity to sensory input or unusual interest in sensory aspects of environment ASD: 5 Diagnostic Requirements

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

1.

Self-Care (eating, dressing, bathing)

2.

Receptive and expressive language (understanding communication & being able to communicate)

3.

Learning (learning new things & being able to apply experiences to new situations)

4.

Mobility (fine and gross motor skills)

5.

Self-direction (ability to make decisions, protecting

• ne’s self interest)

6.

Capacity for independent living-self determination

7.

Economic self-sufficiency (getting and keeping a job)

Intellectual Disability

T erm used when a person has certain limitations in mental functioning and in skills such as communicating, taking care

• f 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.

Therapeutic Interventions

 Cognitive Behavioral Therapy (CBT)  Effective for people with Asperger’s  Using CBT in Asperger’s can reduce

anxiety over a prolonged period of time

 Effective for people with milder range of

intellectual disabilities

 Effective at reducing stress/anxiety in

parents of children with disabilities

Therapeutic Interventions & Caregivers

 Parents of children with challenging behavior

can benefit from multiple sources of mental health support

 Pre and Post test assessments  Literature cited; behavioral health interventions,

psychotropic medication, respite care, 53% of study participants benefitted from at least one

• r multiple interventions in improving quality of

life

Therapeutic Interventions for Caregivers: Stress, Self-Blame & Guilt

 Recent studies of parents w/ children who had severe to

moderate disabilities

 Assessment Instruments used: Situational Guilt Scale,

Beck Depression Inventory, Attributional Style Questionnaire

 As little as 5 (2 hour sessions) showed reduced

depression rates and parental stress

 Group therapy is also effective for reducing caregiver

stress

Families and Culture

 Multicultural pluralism model  Your office should reflect diversity, with

art, materials displayed, books, magazines and website content

 Staff should be diverse and reflect the

community

 Don’t rely on google translator or other

internet resources

Families and Culture

 Do locate and use translators  Don’t use the other children, family or

friends without prior permission

 Identify the contact person in the family  Make sure medical information is

translated

 Work with your HR department to

identify how to meet the needs of culturally diverse families

Families and Culture

 Some cultures do not value our medical

practices

 Families may want to use interventions

that may not mirror our scientific practices

 A family may have varied customs

associated with grieving and funeral practices

Community Membership Model

 Evidence based behavioral health

case management dictates person directed services

 Promotion of self-determination  Effective person centered plans that

lead to meaningful lives

 Culture must be valued, respected

& integrated into practice

Resources

 ARC of Michigan  Michigan Alliance for Families  Michigan Developmental Disabilities

Council

 Michigan Protection & Advocacy, Inc.  MI-DDI  LEND Resources

Summary

 T

each parents advocacy skills

 Utilize resources (refer to social workers)  Use available community resources  Promote school inclusion (Least Restrictive

Environment)

 Promote community inclusion  Promote and teach how individuals can live

meaningful lives!