If you have a disability and want to have a baby, you‘re not alone. Between 10% to 12% of women of childbearing age have a disability, and people with disabilities are just as likely to want a pregnancy as their peers without disabilities.
The Americans with Disabilities Act(ADA) defines disability as “a physical or mental impairment that substantially limits one or more major life activity.” Some disabilities are easily visible — such as paralysis —while others may be invisible, including many life-altering chronic health conditions. While mothers and birthing people with disabilities face some unique challenges, most can have healthy babies and become successful parents.
Being a good parent includes advocating for yourself and your baby — even before it’s born. In one study, mothers with disabilities strongly encouraged other moms with disabilities to do additional research, rather than counting on their doctors to be an expert in their disability. By reading the research in this article, you’re already taking smart steps to help prepare yourself for pregnancy and beyond.
Pregnancy care for parents-to-be with disabilities
As a person with a disability, you may have a higher risk of pregnancy-related complications. So it’s important to have a team of knowledgeable and compassionate healthcare professionals on your side.
For pregnant people with disabilities, finding supportive care can be challenging
Unfortunately, not all healthcare professionals are welcoming to pregnant people with disabilities. Research shows that these women may have negative experiences with healthcare professionals and healthcare systems.
For example, you may encounter healthcare professionals who:
- Don’t think you’ll be able to — or should — become pregnant, carry a baby, or take care of a baby once it’s born.
- Don’t have experience or training in helping other parents-to-be with disabilities.
- Don’t have accessible equipment — such as scales, examination tables, or bathrooms for wheelchair users.
As a result, people with disabilities may skip pre-conception or prenatal care to avoid negative encounters. In the process, they miss vital care that leads to healthy outcomes for mothers and babies.
It is vital to seek pre-conception health advice from a professional you trust if you’re planning to get pregnant, to ensure you are aware of ways in which your disabilities and any treatments you use to manage them may affect your pregnancy. Should you become pregnant unexpectedly, you will want to seek this care as soon as possible.
If you have a negative experience, remember that you are not alone. Look for other healthcare professionals who are willing to work with you.
How to find healthcare professionals who support people with disabilities
Finding the right pregnancy healthcare professionals for your situation might take some work, but it’s worth the effort.
Start by talking to your primary healthcare team or the disability specialist(s) you see most often. They may have insights around:
- Recommendations for healthcare professionals who treat other parents-to-be with disabilities.
- How pregnancy will affect your body, including possible risks.
- Whether you need to modify medications prior to conception, during pregnancy, and while breastfeeding (if you choose) for your or your baby’s health.
- How prenatal vitamins interact with your medications.
- Expectations around diet, changes to routines, equipment adjustments, and any extra help you will need from friends and family as your pregnancy progresses.
- Support groups for parents with disabilities in your area.
When choosing an obstetrician or other pregnancy-related healthcare professional, ask questions like:
- Do you have experience working with expectant parents with disabilities, including my specific disability?
- Are you interested and able to provide care for pregnant people with my disability?
- Are you willing to consult with my [disability specialist] to ensure my baby and I have the best care?
- Do you have accessible equipment for people like me? If not, do you have any workarounds?
- Will you be able to complete a comprehensive exam, knowing I may need extra time?
- When I deliver my baby, how will you plan to accommodate my disability?
Putting together your healthcare team
Ideally, your disability specialist(s), primary care and pregnancy care teams can work together to help you get the best care throughout your pregnancy and postpartum period.
Financial help and programs that can help parents with disabilities
Having a baby is expensive and can put stress on your family’s finances. While there aren’t many grants or programs designed especially for disabled parents, U.S.-based parents may be able to take advantage of government-sponsored programs intended to ease financial needs.
Some government programs that parents with disabilities might qualify for include:
- Medicaid is available to individuals with disabilities who need medical care in many states.
- Women, Infants, and Children (WIC) offers nutritious food for low-income pregnant, postpartum or breastfeeding women.
- Supplemental Nutrition Assistance Program (SNAP) provides food for families with low incomes.
- Children’s Health Insurance Program (CHIP) offers low-cost health and dental coverage and can provide help with labor and delivery costs in some cases.
- Temporary Assistance for Needy Families (TANF) helps families get financial assistance in order to care for their children in their own homes.
- Lifeline helps low-income people stay connected to the internet, a mobile phone or a landline.
The U.S. Department of Housing and Urban Development (HUD) can help individuals with disabilities find affordable housing. Contact your local public housing agency for more information.
Rights of parents with disabilities
In the past, welfare agencies and courts regularly separated children from parents with disabilities. Fortunately, the Americans with Disabilities Act (ADA) of 1990 and the Rehabilitation Act of 1973 were passed to protect these parents from discrimination. When evaluating child custody, courts and child welfare agencies are required to assess each parent as an individual without using disability stereotypes. Additionally, an agency or court is required to help parents participate fully in the proceedings by making reasonable accommodations — such as having a sign language interpreter or providing documents with large print.
To learn more about your rights, visit the ADA’s Rights of Parents with Disabilities. If you have immediate questions about your parental rights, you might want to contact a parent attorney, child custody attorney or a disability rights attorney.
How to access support after birth
After giving birth, people with disabilities experience the normal challenges of the postpartum period — they’re tired, they might be figuring out breastfeeding and they might need extra help.
So, before your baby is born, make a plan to:
- Have some extra support when the baby comes home.
- Work with a lactation consultant to help you learn to breastfeed, even if you lack upper body strength or have paralysis.
- Talk to your doctor about how you can prepare for any flare-ups or changes in your health.
- Join parent networks for camaraderie and new-baby troubleshooting.
Additionally, parenting also may trigger internalized ableism — meaning you feel like you aren’t parenting as well as your peers without disabilities. In these instances, you may want to seek care from a therapist or coach that takes clients with disabilities.
