Pregnancy Care For Women W Intellectual Disabilities

Pregnancy Care for Women with
Intellectual Disabilities
Written by Katie Johnson
Edited by Anne Valentine & Lauren D. Smith
May 2023
Introduction
Pregnant women with disabilities can have a lot of challenges with their
pregnancies. This is especially true for women with intellectual disabilities.
Pregnancy care often does not meet the needs of women with intellectual
disabilities.
We asked doctors about providing pregnancy care to women with intellectual

disabilities. We looked what the doctors told us about why it is sometimes
hard to provide good care for women with intellectual disabilities.
How did we do the research study?
We interviewed 17 doctors who provide care to pregnant women with

intellectual disabilities. We spoke with some of the doctors over the phone
and we spoke to the others in a focus group with other doctors. The
researchers looked at what the doctors said in the interviews.
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What Did We Learn About the Barriers for Doctors?
We found there were many barriers that make it harder for doctors to give
good care to pregnant people with intellectual disabilites. Here are the
barriers we learned about:
Doctors don’t always know how to communicate well with patients with
intellectual disabilities
Pregnancy can be really confusing and complicated. It can be hard for doctors
to explain things in ways that everyone can understand. Some doctors feel
like they don’t know how to provide good care to pregnant women with
intellectual disabilities because nobody ever taught them. This means that
sometimes women are sent to a special doctor to get care, even if they don't
need it.
Doctors don’t always know how a support person should be involved
A lot of people with intellectual disabilities have a family member or Direct

Support Professional (staff) who supports them. These people may come
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with them to their doctor's appointments. Doctors may be confused about

the role of the family member or support person. They aren't always sure if
they should involve this person in decisions or how that person should be
involved.
The doctor also doesn't always know if someone has a legal guardian. If the
pregnant woman and her guardian or support person have different
opinions, the doctor needs to figure out who makes the decision. Sometimes
the doctor needs to talk with someone else (such as a lawyer or hospital staff)
to help figure out who can make a decision.
Doctors often do not know ahead of time that the pregnant person has
an intellectual disability
A doctor may not be sure whether their patient has an intellectual disability.
The file they keep about the patient doesn't say if someone has an intellectual
disability. This problem can make it hard to provide the best care for the
pregnant woman.
It can be difficult for pregnant people with intellectual disabilities to

manage their appointments and tests
During pregnancy, a pregnant woman must often set up appointments for

visits or special tests at a different office from their regular doctor’s office.
Doctors’ offices do not always have office staff to help with booking
additional tests and appointments. Sometimes women with intellectual
disabilities miss appointments or tests they need.
Doctors don’t have enough training
Doctors don’t have enough training about providing care for pregnant
women with intellectual disabilities. If a doctor wants to learn more, they
4
must teach themselves. There aren't many classes about pregnancy care for
women with intellectual disabilities.
Doctors need guidelines
Doctors may use practice guidelines to provide the best care for their
patients. Practice guidelines are written instructions for doctors about how
to care for different groups of people or different health conditions. In the
United States, there aren’t any practice guidelines for doctors who provide
pregnancy care for women with intellectual disabilities. Doctors want to have
guidelines so they can do a better job.
Doctors need plain-language, written pregnancy information to give to

patients
Information about pregnancy is often not available in plain language.

Doctors want to give out reading materials about pregnancy to their patients.
These reading materials may not be accessible to everyone. There needs to be
more health information in words that people with intellectual disabilities
can understand.
Pregnant people with intellectual disabilities need services and supports
More services and supports are needed for people with intellectual
disabilities. Some places have a lot of services but other places do not. These
services and supports should help with preparing for pregnancy and taking
care of the baby.
Pregnant people with intellectual disabilities need longer visits and may
need visits more often
Pregnant women with intellectual disabilities may need to go to the doctor

more often. Doctors want to make sure that a woman with an intellectual
5
disability understands what is happening during the pregnancy and answers

her questions. However, doctors have lots of patients and may not have extra
time to spend with one patient. Also, they may not get paid for longer visits or
more visits. This makes it hard to provide the best possible care.
Why This Matters
The study shows a need for:
1. more doctor training
2. guidelines for doctors about

pregnancy and intellectual
disability
6
3. more time and visits with the

doctor
4. a process at doctors’ offices to ask

about disability, accommodations,
and guardianship
5. information about pregnancy

available in plain language
7
6. services and supports for

pregnant women with intellectual
disabilities
Credit
Adapted from “Clinician-Reported Barriers to Providing Perinatal Care to

Women with Intellectual and Developmental Disabilities,” by L. D. Smith, A.
Valentine, T. A. Moore Simas, S. L. Parish, A. Levy, and M. Mitra, 2023,
Journal of Intellectual & Developmental Disability, 48(1), pp. 12–22.
Funding
This work is made possible by a grant from the National Institute on

Disability, Independent Living, and Rehabilitation Research (NIDILRR grant
number 90DPHF0011). NIDILRR is a Center within the Administration for
Community Living (ACL), Department of Health and Human Services
(HHS). The content is solely the responsibility of the authors and does not
necessarily represent the official views of NIDILRR, ACL, or HHS.
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How to Cite This Brief
Johnson, K. (2023). Pregnancy Care for Women with Intellectual

Disabilities. National Center for Disability and Pregnancy Research,
Brandeis University, Waltham, MA.
Contact
Visit our website: heller.brandeis.edu/disability-and-pregnancy/
Follow us on Twitter: twitter.com/dis_pregnancy
Email us: [email protected]

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Pregnancy Care for Women with

We asked doctors about providing pregnancy care to women with intellectual

How did we do the research study?

We interviewed 17 doctors who provide care to pregnant women with

What Did We Learn About the Barriers for Doctors?

Doctors don’t always know how a support person should be involved

A lot of people with intellectual disabilities have a family member or Direct

with them to their doctor's appointments. Doctors may be confused about

It can be difficult for pregnant people with intellectual disabilities to

During pregnancy, a pregnant woman must often set up appointments for

Doctors don’t have enough training

Doctors need guidelines

Doctors need plain-language, written pregnancy information to give to

Information about pregnancy is often not available in plain language.

Pregnant people with intellectual disabilities need services and supports

Pregnant women with intellectual disabilities may need to go to the doctor

disability understands what is happening during the pregnancy and answers

Why This Matters

The study shows a need for:

1. more doctor training

2. guidelines for doctors about

3. more time and visits with the

4. a process at doctors’ offices to ask

5. information about pregnancy

6. services and supports for

Adapted from “Clinician-Reported Barriers to Providing Perinatal Care to

This work is made possible by a grant from the National Institute on

How to Cite This Brief

Johnson, K. (2023). Pregnancy Care for Women with Intellectual

Visit our website: heller.brandeis.edu/disability-and-pregnancy/

Follow us on Twitter: twitter.com/dis_pregnancy

Email us: [email protected]

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