Supporting People with Developmental Disabilities
The prolife movement has rightly focused on protecting life before birth and has saved countless people in the process. The next essential step is to advocate for the dignity and quality of life of those same individuals after birth. Unfortunately, our advocacy for them in word and deed is less than it should be.
Prolifers are called to advocate for all human life, and among the most vulnerable to neglect, mistreatment, and disrespect are people with disabilities. How many families are affected by these conditions? According to the Institute for Exceptional Care, 16 million Americans currently live with “intellectual or developmental disabilities, representing 3 to 5 percent of the total
U.S. population.”1 The community of those with developmental disabilities is a large demographic that needs our attention.
In this article, I’ll explore how a clearer understanding can inform specific prolife responses of support throughout every stage of life for individuals with developmental disabilities—from the womb, to educational opportunities growing up, to future possibilities of work and independent living.
Definitions and Labels
First, let’s define developmental disabilities. Labeling people can lead to bias and prejudice, but carefully looking at characteristics of medical conditions (including developmental disabilities) can lead to greater understanding, empathy, and compassion. I offer the following descriptions of developmental disabilities with the awareness that knowledge about these is necessary if we are to make reasonable and helpful prolife recommendations.
The Centers for Disease Control and Prevention (CDC) characterizes developmental disabilities as: “a group of conditions due to impairment in physical, learning, and behavioral areas. These conditions may impact daytoday functioning and usually last throughout a person’s lifetime. Most developmental disabilities occur before a baby is born, but some can happen after birth because of injury, infection, or other factors.”2
Developmental disabilities include intellectual disabilities, Down syndrome, Fragile X syndrome, Klinefelter’s syndrome, cerebral palsy, attention deficit hyperactivity disorder, fetal alcohol syndrome, epilepsy (seizure disorder), and autism. The programming needs of someone with a mild level of a developmental disability may cost much less than those of people with a higher level of disability. Frequently legislators and others do not realize how much the needs of those in the latter category will cost an individual and a family, especially in view of how we emphasize strengths and the similarities between disabled and nondisabled people.
Historical Abuse and Maltreatment
At the beginning of the 20th century eugenicists touted the desirability of eliminating undesirable traits from the gene pool. Now today in the early decades of the 21st century, as the CRISPR era of genetic manipulation unfolds, twisted medical science continues to try to physically change or eliminate people with intellectual disabilities, hoping to design “a better human race.” Not only is eugenics frightening, but it goes beyond science itself.
Early eugenicists believed that criminal traits and what was then called “mental retardation” were correlated. A person who was deemed mentally retarded was therefore a likely criminal. Intelligence tests developed early in the 20th century were used to identify those with intellectual disabilities, and people within this group were often forcibly sterilized; persons with IQs of 69 and below faced losing their fertility. Some people with IQs above 69 were misdiagnosed—others with lower IQs who displayed capacity to have marriages and children may have been sterilized.
The State of California led the U.S. in eugenic sterilization, forcibly sterilizing over 20,000 people with disabilities and others deemed “unfit” or “feebleminded” between 1909 and 1979.3 In belated recognition of this injustice, the state launched a reparations program in 2022 to compensate survivors.4
Legislation Protecting Preborn Babies with Disabilities
In 2003 the 110th Congress passed the Prenatally and Postnatally Conditions Awareness Act (PL 110374). This act provided that 1) the Director of the National Institute for Health (NIH) begin overseeing certain activities related to Down syndrome and other conditions; 2) the National Dissemination Center for Children and Disabilities be expanded; 3) national and local peer support programs be initiated; 4) a national registry of families willing to adopt newborns with such conditions be created; and 5) educational programs be initiated for health care providers who provide, interpret, or inform parents of the results of prenatal tests for such conditions. Clearly this was important legislation with great prolife potential.5
Prolife advocates lauded the bill’s potential to prevent eugenic selection of Down syndrome and other conditions. Sadly, the bill’s provision requiring compliance from health care workers was afterwards removed. As of January 2025, twenty-three states had laws requiring a detailed explanation of the developmental disabilities covered by the legislation.
How did this work out in practice? In “Parents of Children with Down Syndrome Reflect on Postnatal Diagnoses, 2003-2022,” a survey revealed maternal dissatisfaction with the same criteria studied in 2003—the provider conveyed the diagnosis with pity, negative aspects of Down syndrome were emphasized, and not enough explanation was provided. This legislation had not improved the kind of feedback parents received when a special needs child was born.6
Lack of Special Education in Private Schools
Prior to 1970, school systems lacked systematic special education procedures, and children with developmental and intellectual abilities were not guaranteed quality education. An important event spurring change was Geraldo Rivera’s 1972 television exposé, “Willowbrook: The Last Great Disgrace.”7 This facility in New York State held between 3,000 and 4,000 developmentally disabled residents; once admitted, they usually remained there for life.
Sneaking into Willowbrook with a film crew, Rivera recorded numerous instances of abuse and neglect. With nothing to do, many people rocked or performed other self-stimulating behaviors. They sat naked on the floor, amid urine and feces. According to Rivera, the smell was so bad that he couldn’t describe it.
Rivera’s television program produced a public uproar that prompted New York State to legislate the Willowbrook Decree, ordering remedial actions and acknowledging the residents’ constitutional right to protection from harm. Afterward, many large institutions closed, and people were placed in small residences where more supervision and more customized services were available.
Nationally, special education for children under age 21 was reorganized under Public Law 94142, ensuring all children across the country a free, public, least restrictive placement as close to their home as possible. In schools, customized services might include a consulting special education teacher, a resource room, a small self-contained classroom, day treatment, or even residential treatment. Using a principle of inclusion, schools attempted to enroll as many children as possible with their peers, except where severe behavior problems or conditions requiring extensive support made this impossible.8
Over the years, many parents of children in private schools, including Catholics with children in the parochial school system, realized that their school did not provide special education services and explored ways to remedy this. One solution was for the local public school district to fund and send a special education teacher to consult in a private school classroom; sometimes a resource room was created. Because of Public Law 94142, payment for these services came from the state through the local school district rather than from the private school.
As a society, we must continue to work to improve the offerings to families affected by developmental disabilities in the realm of private education, especially for those who want to provide faith-based education that also meets their children’s intellectual needs.
Workshops: Tailoring Work Opportunities to People with Developmental Disabilities
My son William Van Ornum is a 40-year-old man with Down syndrome. He once spent his weekdays in a sheltered workshop among peers with developmental disabilities. He absolutely loved his workshop. Housed in a former warehouse, it generated a hum of activity and conversation each day. About two hundred people worked on tasks such as assembling packages, getting items ready for shipping, and completing simple factory tasks. The work involved repetitive actions, something that was calming for many of the participants. It gave them something to attend to and a sense of purpose—real work, real dignity, and real satisfaction with a socialization bonus. William talked with and had fun with his friends each day.
Workshop participants like William were paid modest wages, typically under three dollars an hour—enough to provide them with a sense of financial contribution and spending money. In addition, revenue from the assembly work could be used for the operating expenses of the program. The system emphasized community inclusion and viewed the workshop as a segregated setting, but this workshop was a community unto itself. Sometimes my friends would come along with me when I picked up William at the end of the day just to enjoy the positive environment.
Unfortunately, it’s not hard to imagine how some might misunderstand these workshops and become preoccupied with how they could be abused. In 2013, New York State stopped allowing new workshops to be opened, and the workshop program ended in 2021. In 2024, New York State Senator James Skoufis and Assemblyman Philip J. Steck carried a bill in the state legislature that would end subminimum pay workshops. As of 2024, 16 states have banned subminimum wage programs for disabled workers like William.
“Wages and other opportunities should reflect the growing awareness of what those of diverse experiences and abilities can bring to the workplace,” Skoufis said. “The federal law that allowed the practice of subminimum wage was passed by Congress in 1938, and I think it is fair to say that our understanding has progressed since then.”
While probably well-intentioned, these policy changes produced unintended consequences with serious effects on individuals with disabilities and their families. Many former workers have had trouble finding outside employment; those living at home have had nothing to do during the day, leading parents to be at risk for needing to retire early, limit their work hours, or seek help from relatives. For those who have found minimum-wage employment, there can be conflict with their Medicaid and Social Security benefits and health insurance. Medicaid recipients and those receiving Supplemental Security Income cannot have more than $2,000 to their name.9 Further, the kinds of jobs available often lack permanency, so even if workers can find other health insurance, they risk losing it if they lose their job and can’t find another.
My son was lucky. He was also eligible for a day-habilitation program, which is for people who have greater needs for supervision than the workshop alone could provide.10 He continues to be in a program, but he misses his workshop.
I believe the public and most lawmakers were unaware of the facts of this situation. It would appear they didn’t take into account what the people participating thought about the workshops or talk with any families. Doing so would have put a human face on these people for whom the workshops provided better quality of life, a sense of dignity, and self-respect.
No Right to Live with Your Family
In the United States, government agencies for the developmentally disabled have done a decent job of systemizing client rights. As I write, I have in front of me a list of 38 rights that consumers with developmental disabilities possess in New York State. Independence and self-direction drive all of these. However, gravely lacking is the right to live with one’s natural family, a preferential option for many people with disabilities, but an option for which there is no significant funding source.
An operational definition of independence provided by government agencies, however, is to be living in a group home or similar placement. Beginning in high school, educators begin explaining the process of “independence” from one’s family and moving into a place where such independence is possible. People with disabilities are not informed that what’s actually happening is the exchange of one position of dependence for another.
Residential placement helps families in some ways and is probably the default option for most families as their child progresses into adulthood. Participants in group homes live with their peers and develop friendships, participate in group activities, develop meaningful relationships with staff, and maintain relationships with their biological family. For parents, knowing that their child is in a permanent place allays such fears as who will take care of the child if the parents die. For many, this is a win-win situation, especially when the child sincerely desires a group home.
But if a child wants to continue living at home for a long period, at present there are limited recreation programs and opportunities for respite for family members. There are no programs where agency staff, working for and certified by the agency, can come into the home for significant hours of respite. It is impossible to obtain help from an agency or the state if a parent is sick and there is no one to provide caretaking. The state is spending millions of dollars on placement in group homes, but families lack proportional funding. Concern for the rights of families is a central part of the prolife message. If they desire, developmentally disabled persons should have the right to live at home, with appropriate support.
Recommendations
The dignity and quality of life of developmentally disabled people falls under the direct purview of the prolife movement. After counseling against abortion, prolife advocates’ work is not complete. There should be continuing offers of assistance for families who have chosen to raise and love their developmentally disabled child, lest prolifers merely talk the talk and not walk the walk. We know the prolife commitment does not end at birth—so we must be willing to support and accompany these individuals and families throughout their lives. What follows are some recommendations I’d offer toward that end.
• First, consider media campaigns and live protests to make the public aware of the needs of developmentally disabled people. This approach has been very effective for other special interest groups.
• Second, write to local, state, and national legislators about laws and other issues concerning the developmentally disabled. For instance, keeping Public Law 110374 and its imperfect results in mind, write to legislators and ask for updates and remedies.
• Third, keep up with families affected by disabilities in your community, expanding accompaniment from birth-only to “walking the walk” throughout life.
• Fourth, for those who practice a religious faith, encourage regular public prayer on this topic and full inclusion of people with developmental disabilities in church and parish activities.
We have reviewed the defining qualities of developmental disabilities as well as some areas where prolife focus is needed: keeping the historical memory of eugenics alive; being aware of the Prenatally and Postnatally Diagnosed Conditions Act and the need for better implementation of its recommendations; bringing special education into private and parochial schools; helping the “system” support placement at home as much as it supports group homes; advocating for keeping open sheltered workshops where they have not been closed; and seeking greater support for those with disabilities who choose to live in their family homes. There are so many urgent concerns of the prolife movement that developmentally disabled people have receded into the background. This is an inequity in the movement itself, and I think more focus on them would enrich all of us.
NOTES
1. Institute for Exceptional Care, “Understanding IDD,” Institute for Exceptional Care, accessed September 8, 2025, https://www.iecare.org/aboutidd/
2. A day habilitation program emphasizes prework skills such as music, art, and trips into the community. Higher functioning clients attend the workshop.
3. Leonard Knox Kaelber, “California,” Eugenics in the United States and Canada, University of Vermont, accessed September 11, 2025, https://www.uvm.edu/~lkaelber/eugenics/CA/CA.html
4. Governor of California, “California Launches Program to Compensate Survivors of State-Sponsored Sterilization,” Governor of California, December 31, 2021, https://www.gov. ca.gov/2021/12/31/californialaunchesprogramtocompensatesurvivorsofstatesponsoredsterilization/
5. Centers for Disease Control and Prevention. “Developmental disability basics.” Accessed CDC. gov on March 3, 2025, https://www.cdc.gov/childdevelopment/about/developmentaldisabilitybasics.html Pl 110374. Accessed from https://www.govinfo.gov/content/pkg/PLAW110publ374/ pdf/PLAW110publ374.pdf on March 6, 2025.
6. Mark Bradford. “Discouraging news for disability advocates.” February 22, 2025. Accessed March 5, 2025, from https://www.wordonfire.org/articles/discouragingnewsfordisabilityadvocates/
7. William Van Ornum, Linda Dunlap, and Milton Shore. Psychological Testing Across the Lifespan. Saddle River, NJ: Pearson, 2008.
8. William Van Ornum, “The long road to special needs education in Catholic schools.” Aleteia, 100213, accessed March 6, 2025 from https://aleteia.org/2013/10/02/thelongroadtoincludingspecialneedseducationincatholicschools
9. “Medicaid eligibility: 2025 income, assets, and care requirements for nursing homes and longterm care.” Accessed February 28, 2025, from https://www.medicaidplanningassistance.org/ medicaideligibilitynewyork/
10. James Skoufis. “NYS phasing out segregated programs for disabled people.” Originally published in Adirondack Daily Enterprise, April 22, 2024.
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Original Bio:
William Van Ornum, a retired professor at Marist College, is on the Board of Directors of Abilities First, an agency serving people with developmental disabilities in the MidHudson Valley.
