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Parents With Developmental Disabilties- A Fair Chance

Challenges Facing Parents With Developmental Disabilities

Life experiences of parents with developmental disabilities may take their toll over time, especially if others have negatively valued the parents.  Over time, parents may have internalized these negative expectations.  Parents with developmental disabilities may report:

 Socialization Experiences
       
learned dependency
       
rewarded for obedience
       
not trained for self-sufficiency
       
loyal to kin
       
learned not to question authority
       
learned to fear authority figures
       
lack normal problem-solving skills
       
limited social skills
       
expect social relationships to be "unequal"
       
rely on a "benefactor" to make decisions
       
felt stigmatized and unwanted
       
learned to use cover-up techniques and compensatory behavior to conceal deficits
       
experienced harsh consequences for not meeting unreasonable expectations 

Life Experiences
       
deprivation and neglect
       
abuse and trauma
       
poverty, unemployment and lack of job skills
       
mistreatment at the hand of "helpers"
       
overwhelming circumstances

Learning Style Differences
       
learning deficits such as processing or memory problems
       
limited functional academics such as reading or writing
       
limited ability to use problem-solving in complex or unfamiliar situations
       
difficulty keeping track of time
       
difficulty applying knowledge from one situation to another
       
difficulty discriminating 

Which May Have Resulted In
       
low self-esteem
       
shut down out of fear
       
confusion and panic
       
inability to cope and comply
       
lack of trust
       
self-protective defenses

CRITICAL ELEMENTS OF INTERVENTION 

ESTABLISHING A RELATIONSHIP

The caseworker must patiently establish a positive, trusting relationship.  Past experiences may have left the parent very distrustful of authority figures.  Parents may initially feel quite intimated and fearful.  They may even deny or minimize the difficulties in an attempt to please the caseworker.  Caseworkers should remember:
       
don't make assumptions based on the initial contact
       
take time to establish rapport
       
understand that there may be a period of testing, i.e., missed appointments, unwilling to answer the door or participate in conversations
       
convey genuine interest, respect, honesty, consistency and model good boundaries
       
avoid criticism, advice-giving such as "you should..., you need to..."
       
validate feelings, offer choices, explain consequences
       
use humor often and appropriately 

Caseworkers must pay attention to the basic survival needs of the family.  The parent may be preoccupied with survival issues, including a sense of security and belonging.  These issues must be addressed first or they will distract from the focus on parenting issues.  The caseworker may provide referrals to appropriate community agencies.  They should assist with the applications.  The parent may need help and may be too embarrassed to ask for help.

SETTING REALISTIC, REASONABLE, AND FAIR GOALS 

Make sure the expectations of the treatment plan goals are: 
1.     
Realistic
2.     
Reasonable
3.     
Fair
 

EACH PARENT'S LEARNING STYLE
NEEDS TO BE CONSIDERED!
 

1.                 Realistic

Remember the special education model.  Children with learning problems are not expected to learn to read at grade level after a six-week crash course in reading.  Special education stresses individual learning goals that reflect sequential steps that are paced over time. 

Make sure the expectations are realistic!  For example:
       
Does the parent have transportation?
       
Does he/she know how to use public transportation?
       
Does he/she know how to get to the referral agency?
       
Could he/she be taught to use public transportation?
       
By whom?
       
What learning strategy would be most effective? 

THERE IS NO CRASH COURSE IN PARENTING FOR THIS POPULATION.  METHODS AND MATERIALS MUST BE APPROPRIATE AND PROVIDED BY TRAINED PROFESSIONALS. 

2.                 Reasonable

Make sure the expectations are reasonable.  Explicit, intensive-training methods should be geared to individual needs!  Beginning strategies could include:
       
select (with the parent) a few high priority learning tasks
       
focus on one task at a time
       
break the task down into its simplest steps
       
teach in the context of actual life situations
       
model and demonstrate
       
use repetition
       
use concrete examples
       
use guided practice
       
use corrective behavior and positive reinforcement
       
allow the parent to set the pace
       
extend the time frame beyond the "typical"
       
watch for signs of fatigue and disinterest 

3.                 Fair

Make sure the expectations and the process is fair.  After all, what is success?   

Success is giving the parent a fair chance to make necessary changes, whether this results in out-of-home placement or the child remaining at home.

SOME QUESTIONS TO THINK ABOUT: 

1.      Do you look beyond the diagnosis and the stereotype? 

2.      Have you put yourself in the parent's situation?  How would you feel as a person with a developmental disability? 

3.      Do you communicate that you respect the parent as a person of value? 

4.      Do you really believe this parent is your equal and has knowledge and expertise about his or her own child? 

5.      Do you listen to the parent and avoid using jargon and technical terminology? 

6.      Do you value and respect the parent's time as much as your own by keeping appointments and returning phone calls in a timely manner? 

7.      Do you follow through on your commitments to the family, modeling consistency and dependability? 

8.      Do you suspend judgment in conversation wit the parent, avoiding critical or shaming remarks? 

9.      Do you make every effort to steer families toward solutions and resources and give the parent a fair chance to success? 

10.  Do you obtain information from other service providers that will help identify the needs of the family and the appropriate strategies for intervention? 

11.  Do you have sufficient knowledge of parents with developmental disabilities to ethically treat or provide services to this family?

 This information may be reproduced but not altered in any way. Excerpted from the training curriculum, "Working with Families with Children/Parents with Developmental Disabilities".  Developed by Natasha Green, B.A. and Virginia Cruz, D.S.W., The Social Work Program, Metropolitan State College of Denver, PO Box 173362, Campus Box 70, Denver, Colorado, 80217. E-mail: Info@DevelopmentalDisability.org

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