Resources for LGBTQ Parents Raising Children With Disabilities

Finding a Health Care Provider That’s Right for Your Family

It’s not unusual for LGBTQ parents to worry about encountering discrimination when they seek medical care for their children, especially if they’ve faced discrimination when getting health care for themselves.

“The LGBTQ community is more likely to experience discrimination in health care settings than our non-LGBTQ counterparts.”

– Human Rights Campaign (HRC)

Generally speaking, larger health care systems have diversity, equity, and inclusion (DEI) initiatives in place to help create a welcoming atmosphere for same-sex couples, transgender and nonbinary individuals, and others in the LGBTQ community.

For example, you are likely to see workers wearing rainbow buttons or name badges indicating their preferred pronouns. Additionally, frontline employees at larger hospitals are usually trained to use LGBTQ family members’ preferred names, pronouns, and gender identity in medical documents.

When looking for a health care provider for your family, HRC’s Healthcare Equality Index 2022 is a helpful resource. The HEI is a national benchmarking tool that looks at health care facilities’ policies and practices based on the inclusion and equity of LGBTQ patients, visitors, and employees.

In 2022, nearly 500 facilities earned a perfect score of 100 and were deemed an HEI “LGBTQ+ Healthcare Equality Leader.”

Most U.S. hospitals — about 80% — are accredited by The Joint Commission, which prohibits facilities from discriminating against a person based on their sexual orientation or gender identity. You can search for accredited health care organizations near you on the commission’s Quality Check web site.

Additionally, the national organization GLMA Health Professionals Advancing LGBTQ+ Equality has partnered with the Tegan and Sara Foundation to offer a searchable database of LGBTQ-friendly health care providers.

Dealing With Discrimination

Sadly, LGBTQ individuals still face discrimination in their personal lives, as well as in settings such as health care and employment. This is especially true when an LGBTQ person belongs to another marginalized group because of their race, gender, disability, or other identities.

Did you know?

More than 1 in 3 LGBTQ Americans said they had faced some type of discrimination in 2021, according to a survey by the Center for American Progress.

Know that you have the right to file a complaint if a health care facility or provider discriminates against your family. You can remain anonymous but must provide a description of the incident and the date it occurred.

HRC offers a downloadable Healthcare Bill of Rights that explains the health care rights of LGBTQ patients.

Here are some steps you can take if your family experiences discrimination at a hospital:

Reach out to a hospital social worker or patient relations department for help.
Follow the hospital’s patient grievance process.
File a complaint with The Joint Commission.
File a complaint with your state health department.
File a complaint with the Office of Civil Rights.
Contact an attorney or reach out to civil rights group Lambda Legal at 866-542-8336 or through their Help Desk.

Under federal law, hospitals participating in Medicare and Medicaid programs must have a patient grievance process. You can learn more by requesting a copy of the hospital’s Patient Bill of Rights.

To file a complaint against a doctor or other health care provider, contact your state’s licensing board.

Health Care Benefits & Financial Support

When a child is diagnosed with a birth injury or disability, the joy of parenthood can quickly turn into anguish. You may wonder how you will be able to afford quality care for your child, especially if you have emptied your bank account paying for assisted reproductive technology or adoption fees.

Know that you are not alone. Children with disabilities and/or their families may qualify for various health care benefits and financial support.

LGBTQ parents can see if they’re eligible for the following government programs:

Children’s Health Insurance Program (CHIP): This joint federal and state program provides low-cost health coverage to children in families with incomes too high to qualify for Medicaid.
Medicaid: This federal program provides health insurance to low-income families.
Medicare: Children with special needs may qualify for services under Medicare if they are between the ages of 20 and 22 and receive Social Security Disability Insurance.
Temporary Assistance for Needy Families (TANF): States use federal TANF grant money to provide temporary monthly cash assistance payments to qualifying families.
Title V Programs: Each state offers services to children under 18 who have special health care needs under the Title V Maternal and Child Health (MCH) Block Grant of the Social Security Act. Title V programs are partnerships between federal and state governments designed to support families.
Women, Infants, and Children (WIC): This program helps low-income families afford nutritious food.

Keep in mind that this is not a complete list. Some other sources of support include grants, home modification assistance, and birth injury lawsuits.

Children with disabilities are also entitled to special education services.

Our Financial Support for Children With Disabilities resource has more information about potential financial support options for your family.

Special Needs Support Groups

Seeking help for health care and financial needs is only one piece of the puzzle. Parents of children with special needs often feel overwhelmed and depressed.

A study published in the Journal of Autism and Developmental Disorders found that some parents of children with autism had stress levels similar to soldiers in combat.

That said, there are many support groups and nonprofit organizations dedicated to helping families manage daily life with a child who has special needs.

You may be able to find support from one or more of these groups:

In addition, you may be able to find resources by connecting with other LGBTQ parents. Seeking support from families like yours is important, especially if you or your partner lack support from your own family.

Some groups that advocate for LGBTQ parents and their children include:

You can also look for local LGBTQ parenting groups and support groups specific to your child’s disability on the internet and social media platforms like Facebook.

Birth Injury Basics

A birth injury is a physical injury that an infant sustains shortly before, during, or after the birthing process.

Did you know?

The Centers for Disease Control and Prevention (CDC) estimates that 7 out of every 1,000 babies born in the United States have birth injuries.

While some injuries are minor and heal on their own, others are more serious and can result in permanent disability. Some common types of disabilities that can develop after a birth injury include cerebral palsy, severe Erb’s palsy, and autism.

Birth injuries can be caused by a number of factors, including conditions related to the birth parent or infant or external factors such as a doctor or nurse’s medical error.

You can download the Birth Injury Justice Center’s Free Birth Injury Guide to learn more.

Assisted Reproductive Technology & Birth Injuries

Some studies have found that Assisted Reproductive Technology (ART) increases the risk of a child being born with a birth injury. ART procedures include all fertility treatments involving the handling of eggs or embryos.

Many LGBTQ couples use a type of ART known as in vitro fertilization (IVF) to have children.

Children conceived using ART are twice as likely to develop cerebral palsy, according to a 2021 analysis in the World Journal of Pediatrics.

This increased risk is connected to preterm delivery and multiple births, which are more likely to occur when children are conceived through ART.

What Should I Do If I Think My Child Has a Birth Injury?

A doctor places a stethoscope on a baby's chest — Baby receiving a checkup

Sometimes signs of a birth injury do not appear until months or even years after a child is born. Therefore, a birth injury diagnosis is likely to be delayed, especially when symptoms are mild.

If you are worried about your child’s health or development, you should schedule an appointment with your child’s pediatrician as soon as possible. Early treatment can be crucial to treating a birth injury.

You can prepare for the appointment by bringing:

A list of your child’s symptoms and when they started
Information about the birth parent’s pregnancy and delivery
The child’s medical records and/or history
Written questions to ask the doctor

Your doctor may monitor your child or refer you to a specialist like a pediatric neurologist or child development specialist. They may also order diagnostic tests such as brain scans, bloodwork, or speech and hearing screenings.

Dealing With Missing Medical Information

LGBTQ parents are more likely to adopt or foster children than non-LGBTQ parents, which can present added challenges when a child has a health condition.

“Same-sex couples are four times more likely than opposite-sex couples to have adopted children or stepchildren.”

– U.S. Census Bureau

Adoptive and foster parents often struggle when their child does not have complete medical records to help with a medical diagnosis or treatment.

LGBTQ parents who have an open or semi-open adoption should have access to significant medical information from the birth parents and birth family that can help. Additionally, parents may be able to request health records from the adoption agency or attorney who arranged the adoption.

There are doctors at adoption medical centers who specialize in the issues that often arise with adoptive children.

Adoption center medical professionals have experience interpreting international medical records and knowledge about health risks from different countries.

Adoption medical centers care for adopted children who:

Come from a family with a history of psychiatric illness
Have special health care needs
Lived in orphanages or foster homes
Were exposed to alcohol or drugs

You can find a list of international adoption medical clinics at International Adoption Help.

All parents want the best for their children, and that includes medical care that allows them to achieve optimal health and live their best lives. LGBTQ parents may need to do a little extra research to locate pediatric medical professionals who are not only good at what they do but who also treat all family members with the respect they deserve.

Fortunately, many resources are available to help LGBTQ families find and afford quality medical care and provide them with the emotional support they need as they care for a child with special needs.