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Parents with Intellectual and Developmental Disabilities (IDD)

Recognizing and working with an underserved population

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Learning Objectives

At the conclusion of this module, you will have a better understanding of:

The history of how parents with IDD have been treated in the US.
How the ADA pertains to parents with IDD.
The characteristics and support needs of parents with IDD.
What we know about parenting capacity based on research.

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History of Parents with IDD and the�Eugenics Movement

Forced sterilization
Involuntary sterilization legalized
Sterilization continues to happen (find out more HERE)
Child removal based on disability

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What is an intellectual disability?

“An intellectual disability occurs before age 18 and is characterized by significant limitations in intellectual functioning and adaptive behavior as expressed in conceptual, social and practical adaptive skills” (AAIDD, 2011)

Parents with intellectual disabilities may not self-identify as having an intellectual disability.

Some parents, such those on the Autism Spectrum or with a Traumatic Brain Injury may have similar difficulty interpreting and using information.

Want to find out more about intellectual disability?

Vitis the CPIR Parent Center Hub HERE

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Understanding Concepts

Engage in abstract thinking
Use executive functioning (e.g., plan, strategize, set priorities, be flexible)
Rely on short-term memory
Use functional academic skills (reading and money management).

Do you support people who struggle to understand concepts and/or what you are telling them or asking them to do? Take a moment to think about some of the supports that you already offer to parents who struggle. If you don’t offer any, this is a good place to start!

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Can a person with IDD become a parent?

Being a parent is a fundamental right and many people with IDD choose to become parents!

Current research reveals that there are 4.1 million parents with disabilities in the United States, roughly 6.2 percent of all Americans (Powell, R.M., Parish, S.L., & Akobirshoev, I., 2017).

Research shows that IQ does not impact parenting until it falls below 50. Even then, many parents do well with appropriate supports.

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Listen to the story of a mom with IDD and her daughter

A Life Defined Not By Disability, But Love

From Story Corp on National Public Radio

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Impact on Parenting

Get information to fit their learning needs.
Understand and live within a budget
Find a ride to appointments.
Get safe and affordable childcare.
Manage routines.
Learn to discipline safely.

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Impact on Parenting

7. Navigate multiple systems.

8. Develop healthy relationships.

9. Get and keeping adequate housing.

10. Reduce social isolation.

11. Access community resources.

12. Adjust strategies as children grow.

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Consider This!

Think about the parents you support.

Can you identify anyone who faces several of the challenges just discussed?

Also, think about the fact that most people, with and without a disability, may struggle with these challenges. It’s a matter of degree and how much support people need. Unfortunately, for many parents with IDD, the people surrounding them tend to catch them getting it wrong instead of supporting them to get it right.

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How the American With Disabilities Act (ADA) Impacts Parenting Rights

Prohibits discrimination based on disability
Right to create and maintain families
Requirements to provide reasonable accommodations.
https://www.ada.gov/doj_hhs_ta/child_welfare_ta.html

Consider this!

Do you know a parent who has lost custody of a child because the parent had a disability?

What happens when a child is removed from a family at birth? The impact can be devastating.

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Ongoing Rights Violations �for Parents with IDD

Ongoing struggles to retain custody.
Over representation in referrals to Child Welfare.
No adequate assessment of parenting capacity.
High rates of separation (40-80%)!

You can read more about these staggering statistics in the groundbreaking Rocking the Cradle Report

[Bulleted items should fly in as the longer version is read by the narrator]

Even today, 30+ years after the passage of the Americans with Disabilities Act, parents with intellectual disabilities are the only distinct community of Americans who must struggle to retain custody of their children.
Parents with intellectual disabilities and their children are overly, and often inappropriately, referred to child welfare services and, once involved, are permanently separated at disproportionately high rates.
Parental rights are sometimes terminated solely upon the determination that a parent has an intellectual disability. Often, there is no assessment of the parents’ capacity to successfully parent with appropriate supports.
Removal rates

As a member of the general population, you have less than a 1% chance of having your child removed from your care by Child Welfare. Rocking the Cradle found that removal rates where the parent has an intellectual disability, is a staggering 40-80%! (highlight this statistic in some way on the slide)

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What are the laws in your state?

What are the laws in your state and how can you find out?

Take a moment to visit The National Research Center for Parents with Disabilities and look at their Map of Current State Legislation Supporting Parents with Disabilities.

Are there laws in your state, or pending legislation, that protect the rights of parents with IDD?

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Map of Current State Legislation Supporting Parents with Disabilities

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The Importance of State Legislation Supporting the Rights of Parents with IDD

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“Adequate” or “Good Enough Parenting”

People with IDD can be good parents.
No parent is perfect, and perfection is not the goal.
Being less than a perfect parent does not mean that people can assume a parent with IDD will cause significant harm to their child.
“Good Enough Parenting” or “Adequate Parenting” is parenting that meets the child’s basic needs

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Does an Intellectual Disability Impact Parenting?

Intellectual ability is not a reliable predictor of parenting performance.
Parenting capacity is influenced by many factors that change over time.
Parents with IDD need formal and informal supports in their lives.
They need a village, the same way most parents do!

David Wechsler, who created a widely-used IQ test, , believed that intelligence included a variety of measurable skills that should be considered in the context of a person’s personality (Wechsler, 1958, p. 7). So, it is both about your cognitive ability and how you handle everyday life and life’s major hurdles, including parenting.
Dr. Nicole Brisson (2017) notes that “intellectual ability is an unreliable predictor of parenting performance,” and that “with appropriate training, perseverance, and support, many parents with low IQ can redress parenting skill deficits.” (Brisson, N. (2017). Determining the parenting capacity of parents with low IQ. Juvenile Law Reader. Vol 14, (3) p. 1, 3-7)
Parenting capacity can be influenced by the age of the child, the parent’s life experiences and their circle of support. These factors can change as both parent and child grow.
Parents with IDD often need reasonable accommodations and supports, both formal and informal, to be most successful.
They need a village, the same way most parents do!

[A visual of a village here might be helpful]

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Supports that work

Direct Support Professional
School staff
Mental Health clinician (if one is involved)
Parent Support Center staff (like you!)

Informal Supports

Families and friends
Live-in partners
Shared parenting
Peer mentors
Delivered services
Nieghbors

Formal Supports

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Identify Formal and Informal Supports

Direct Support Professional
Teacher
Friends
Transition Coordinator
Spouse
Counselor
Community Members

FORMAL

INFORMAL

FORMAL

INFORMAL

FORMAL

INFORMAL

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To provide effective support for parents with IDD you can:

Presume competence
Learn about the needs of parents with IDD
Presume people with IDD want to excel as parents
Make explanations and informational material understandable

Provide individualized support
Help parents know their rights
Listen to what families tell you.
Use a strength-based approach
Help each family set priorities.
Seek to understand the family’s perspective

You can help parents by making sure they understand your role as Parent Center Staff. Creating an easy-to-read handout with pictures may work well so they understand you are a resource and know what you can and cannot help with.

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Additional Learning

Interested in learning more about supporting parents with IDD? Visit The Association for Successful Parenting (TASP) at www.achancetoparent.net and keep your eye out for additional modules on Parents with IDD created by TASP coming to the CPIR E-Learning Hub over the next year.

They include:

Effective Support Strategies and Assessing Individual/Agency Capacity in Supporting Parents with I/DD
Support Parents with I/DD Using Effective Communication Strategies
Support Parents with I/DD Using Effective Social Strategies
Understand What Self-Advocates Say About Supports and Services.

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Additional Learning

The Association for Successful Parenting – supports parents with IDD through education, advocacy, and support. A list of additional resources can be found on our website HERE.

National Resource Center for Parents with Disabilities conducts research and provides training and technical assistance to improve the lives of parents with disabilities and their families.

Video: True Inclusion in Making a Family: Ivanova Smith talks about her own journey becoming a mother, about the myths about people with IDD, and the discrimination they've faced in law.

A Celebration of Family: Stories of Parents with Disabilities: Contains the stories of thirty families. In every family, one or both parents have disabilities: physical, mental, sensory, and/or intellectual.

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Quiz

Parents with IDD have their children removed from their care:

10-20% of the time
90% of the time
40-80% of the time
Never

Why are informal supports better over time?

They tend to have more longevity and less turnover
They are easier to find
They don’t need to be paid
None of the above

Name 3 areas where parents with IDD may need support

Navigate multiple systems.
Develop healthy relationships.
Access community resources.
All of the above

How can I support a parent with IDD?

Make explanations and informational material understandable
Seek to understand the family’s perspective
Presume people with IDD want to excel as parents
All of the above