With Mother’s Day recently passed and Father’s Day just around the corner, families across the United States are celebrating the dedication, love, and sacrifice that parents show their children and the many ways their work contributes to society as a whole. Parents with disabilities have an extra reason to celebrate this year; on May 1, the U.S. Department of Health and Human Services issued a regulation which ensures that parents and prospective parents with disabilities aren't discriminated against in the services provided by HHS-funded child welfare or adoption agencies. This regulation, titled “Discrimination on The Basis of Disability in Health and Human Services Programs and Activities” also:

• Ensures that medical treatment decisions are not based on negative biases or stereotypes about people with disabilities, judgments that an individual with a disability will be a burden on others, or dehumanizing beliefs that the life of an individual with a disability has less value than the life of a person without a disability;

•Prohibits the use of any measure, assessment, or tool that discounts the value of a life extension on the basis of disability to deny, limit, or otherwise condition access to an aid, benefit or service;

•Sets accessibility standards for websites and mobile apps to ensure that health care and human service activities delivered through these platforms are readily accessible to and usable by people who use adaptive technology, such as screen reading and magnification software.

•Adopts the U.S. Access Board’s standards for accessible medical diagnostic equipment, such as exam tables and mammography machines;

•Details requirements to ensure nondiscrimination in the services provided by HHS-funded child welfare agencies, including, but not limited to, reasonable efforts to prevent foster care placement, parent-child visitation, reunification services, child placement, parenting skills programs, and in- and out-of-home services;

•Clarifies obligations to provide services in the most integrated setting, such as receiving services in one's own home or on an outpatient basis instead of arbitrarily requiring that certain types of care, such as intensive physical or speech therapy, is only provided on an in-patient basis.

For parents like me, this is a significant development in our human and civil rights and one we weren’t sure we would ever see.

As I packed my hospital bag in preparation for the birth of my first child Leo in 2013, I added all the items mothers are encouraged to include; insurance information, an extra-long cord and charger for my phone, and comfortable clothes to wear the day I brought my baby home. However, I added one thing most mothers don’t and should never have to; several copies of a booklet explaining the rights and abilities of people like me to be parents in the first place. Along with my toothbrush, deodorant, and nursing bra, I included three copies of “Parenting Without Sight: What Attorneys, Social Workers, and Parents Should Know About Blindness,” a resource put out by the National Federation of the Blind in hopes of ensuring that mothers like me don’t encounter discrimination on what should be the happiest day of our lives.

Shortly before I got pregnant with Leo, a blind mother in Missouri was attempting to breastfeed her firstborn child when she noticed that something seemed to be wrong. She called in a nurse, who noticed that the mother had unintentionally covered the baby’s nose with her breast so that the baby couldn’t breathe. The nurse showed the mother how to reposition the baby, assured her that new mothers often need help mastering nursing techniques, and the new mother continued to feed her baby. Although most new mothers need guidance on nursing (this is why labor and delivery units employ lactation consultants, after all) and it was the mother who noticed that something wasn’t right, the nurse filed a report with Child Protective Services that the baby “lacked proper custody.” The mother and her partner (who was also blind) had their baby removed and placed into foster care at only a few days old. They were given supervised visitation, but were never allowed to hold their baby, only gently stroke her arms and legs. As a mother, I can only imagine the heartache and trauma these parents faced night after night, not knowing where their baby was or if they would ever bring her home. The parents filed an appeal; court dates were set; and thankfully the little girl was returned to her parents on her two-month birthday.

This sent shockwaves through the disabled community. My friends and I began talking about having lawyers on-call when we gave birth. Friends who had never wanted to have home births began exploring it, not because they wanted to, but because they were terrified of having their babies removed from their care if they gave birth in a hospital. We knew the experience of the mother in Missouri was extreme, but we also knew disabled parents faced discrimination in hospitals far too often and that we were mistaken if we thought it could never happen to us.

My anxiety was not unfounded. After 28 hours of labor, I woke up to a semi-circle of about eight medical professionals surrounding my bed. UC Davis was a teaching hospital, so there were interns, residents, med students, and an attending physician.

“We need to have a reality-based conversation,” said the physician.

My heart dropped and a painful knot formed in my stomach. I knew where this was about to go. For the next half an hour, the staff interrogated me with question after question about how I would dress the baby, get him to medical appointments, and what I would do if he was ill. I felt exhausted, in significant pain, terrified, and powerless, but I also knew this conversation could determine whether I spent the next few months snuggling with my newborn or fighting to get him back. Thankfully, I had attended a seminar hosted by the Blind Parents Group of the National Federation of the Blind and had many friends who were blind parents, so I had answers to all of their questions.

They still made me meet with a social worker “to make a plan that ensured that they knew I could take care of the baby.” Mercifully, the hospital social worker spent ten minutes with us, determined we had a safe place for the baby to sleep and weren’t currently under the influence of drugs, and we never heard from her again. Unfortunately, this resulted in my husband and I feeling like we needed to hunker down and get out of that hospital as soon as we could. Instead of having the benefit of the nurses’ substantial knowledge and advice, and learning as much as we could from them, we were terrified that they were judging us, so we said as little to the nurses and doctors as possible.

In 2012, the National Council on Disability (a federal entity that advises the President, Congress, and federal agencies on disability policy) issued a report entitled “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children.” According to this report, 6.2% of American parents who have children under the age of 18 have at least one disability. Many of these parents report facing discrimination by healthcare, social service, and family court professionals, particularly upon the birth of their children, at the time of a divorce or parental separation, during custody disputes, and when pursuing fertility treatment, adoption, or becoming foster parents.

Since the issuance of this landmark report, at least 20 states have passed laws protecting parents with disabilities against discrimination in the child welfare and family court systems.

•Arkansas, Idaho, Maryland, Nebraska, and West Virginia incorporate the Americans with Disabilities Act’s definition and requirements into their state laws.

•Idaho, Kansas, Massachusetts, Nebraska, South Carolina, and Vermont require courts to consider factors such as adaptive technology, alternative parenting techniques, and support services for parents with disabilities when making determinations about child custody.

•Illinois, Nebraska, Oregon, and Virginia have laws that place the burden of proof on the party alleging that a parent’s disability harms the child, requiring clear and convincing evidence, rather than placing the burden of proof on the disabled parent to prove they are capable of parenting.

•Idaho, Massachusetts, Rhode Island, and South Carolina have removed disability as grounds for termination of parental rites in applicable state laws.

Although parents with disabilities have worked tirelessly to pass these state laws, the passage of this new federal regulation ensures that parents across the United States have legal protections against discrimination and negative misconceptions held by medical professionals, child welfare systems, family courts, and adoption and foster care agencies. Because of this regulation, if parents with disabilities face discrimination when trying to adopt a child, become foster parents, or fight for custody of a child at the time of divorce or separation, they have legal grounds to fight and ensure they are receiving equitable consideration.

People with disabilities have been parenting since the beginning of time. And for centuries, our human right to have families of our own has too often been callously dismissed. I’m proud of my community of disabled parents for working together so effectively and relatively quickly since 2012 to ensure the rights of those who come after us.