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

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!

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 $24,600The 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

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 Technique

• 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.

Communications Technique

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 Techniques: 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 one’s self interest)

6. Capacity for independent living-self determination

7. Economic self-sufficiency (getting and keeping a job)

Intellectual Disability

Term 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.

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

or 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

Teach 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!