America Is Failing Children With Disabilities
One parent’s tale: “Imagine waiting seven years for your child to receive speech therapy—that’s not a tale of neglect; it’s a reality faced by many around the country.”
Unfortunately, this situation is not uncommon. Consider the Home and Community-Based Services waiver, a Medicaid program that allows states to provide long-term care services at home or in the community rather than in institutional settings. On average, recipients of this program wait four years for key therapy.
This prolonged inaccessibility doesn’t stop with therapy. It also happens across other Medicaid care programs, public education, and Social Security. These gaps in support have left families struggling through multiple crises—developmental, emotional, and financial.
This article looks at the scope of rising disability diagnoses, the effects of systemic failures, the costs for families, and policies that could help prevent a collapse and provide better services to the children who need them.
The Hidden Scope of the Problem
Prevalence and Diagnosis
Today, disability diagnoses are more common than ever before. Statistics from the Centers for Disease Control and Prevention’s National Health Interview Survey showed that the percentage of U.S. children diagnosed with developmental disabilities increased from 7.4% in 2019 to 8.6% in 2021. Boys were approximately twice as likely to be affected.
One diagnosis in particular—autism—rose significantly in comparison to others. According to the CDC, approximately one in 36 children was diagnosed with autism in 2020. The following factors may contribute to the increasing number of autism diagnoses:
- Better screening tools
- Broader diagnostic criteria
- A better understanding of these conditions and how they present in both boys and girls
Disparities by Race and Income
The data shows that developmental disabilities do not present equally across children of all races or income levels. According to studies, 9% of Black children have received developmental disability diagnoses, whereas only 4.9% of Asian children have received them. Some factors that may contribute to these disparities include the following:
- A lack of health care coverage
- Cultural and linguistic barriers to evaluation or support
- Unequal access to early interventional support
Where the System Breaks Down
Special Education Staffing Crisis
Unfortunately, a diagnosis does not automatically lead to accessing necessary services. Across the country, 74% of elementary and middle schools and 66% of high schools reported trouble hiring special education teachers for the 2024-2025 school year. The previous year, the special education departments in more than one in five school districts didn’t have full staffing.
Multiple factors have contributed to this shortage. First, special education teachers often face burnout, which can result from overwhelming caseloads and large classroom sizes. They often deal with excessive paperwork and grading tasks. In addition, they may have limited time to prep for the school day. The result? Many schools across the country now have to rely on paraprofessionals or substitutes for necessary special education services.
That’s problematic, especially with the rise in the need for special education services. For example, special education enrollment has risen by 32% in San Antonio since 2020. That increased need strains the current teachers, paraprofessionals, and substitutes, contributing to burnout.
IDEA Funding Shortfall—How It Affects You
The Individuals with Disabilities Education Act aims to make public education available to children with disabilities by ensuring the provision of special education and related services. IDEA should provide a safety net for families, but Congress has not fully funded the program to meet the actual costs. In reality, Congress currently funds only about 12% to 13% of the 40% originally promised. That gap means school districts must make up the difference.
They do, but many sacrifices are required. School districts make up the difference by diverting money from general education, resulting in fewer counselors, larger class sizes, and overwhelmed staff members who often struggle with burnout. Still, help may come soon. Currently pending action by Congress is the IDEA Full Funding Act, also known as the Keep Our PACT Act, S.B. 343, which could help close the funding gap that plagues school districts nationwide.
Medicaid HCBS Waiver Waitlists
Medicaid HCBS waivers that allow states to offer long-term care services in community and home settings don’t come easily, and the waitlists are extensive. Today, approximately 700,000 people in the United States are on these waitlists. For children with intellectual or developmental disorders, the wait can average anywhere from 40 to 50 months. There are even cases of families waiting as long as 10 years.
Waitlists are a direct result of funding caps on optional services and the growing demand for support that results from more effective diagnostic strategies. In March 2025, temporary support from the American Rescue Plan Act expired, further exacerbating waitlist issues. Additionally, HCBS is in such high demand that over 8 million new workers are needed by 2030.
SSI Bottlenecks and Denials
Supplemental Security Income helps those with disabilities receive additional financial support when they cannot work, don’t have a high income, or don’t qualify for Social Security Disability Insurance. Roughly 60% of all children applying for SSI don’t get it. Another 20% lose SSI benefits during periodic eligibility reviews. Delays in getting SSI may run from six months to many years, causing significant problems for families.
The Social Security Administration lacks the manpower to reduce wait times. Both the SSA and Disability Determination Services, the state-based agencies that process claims, have shrunk by 16% since 2010, creating a staffing squeeze that leads to claim backlogs.
Several factors delay claims, including postponed hearings. In December 2024, the SSA changed its rules and began using the Occupational Requirements Survey to replace the outdated Dictionary of Occupational Titles. This new survey identifies jobs that people with disabilities might perform. These changes and the resulting delays harm families, stalling children’s SSI claims and forcing them to wait while SSA evaluators assess their functional limitations.
How a Child's SSI Claim Moves and Stalls
The way an SSI claim goes from start to finish can vary slightly, but the general timeline looks like this:
- Day 1: Application submitted.
- Weeks 1 to 4: The state’s DDS assigns the application to a reviewer.
- Weeks 4 to 12: The DDS gathers records about the child’s disability, education, and other necessary references.
- Weeks 12 to 24: The DDS may request or order consultative examinations.
- Month 6: Most initial decisions are made, with approximately 60% resulting in denials.
- Months 6 to 12: Families may file an appeal to seek reconsideration.
- Years 1 to 2: A second denial may occur, leading to a request for a hearing.
- Years 2 to 3: You receive an Administrative Law Judge hearing date, which can often take up to another year.
- Years 3 to 4: Parents receive a final decision.
The Human Cost
Family Financial Strain
Raising a child in the United States costs approximately $30,000 in 2025. That's a 35% increase since 2023, and it only includes children without disabilities. For families of children with disabilities, their lifetime expenses can be exponentially higher, exceeding $2.5 million—over 10 times the average. Problematically, 60% of U.S. parents reduce work or quit entirely to care for their child with disabilities. That puts them at a disadvantage financially, as research shows that mothers of children with disabilities often lose $21,000 or more annually in earnings. It's no surprise that parents of children with disabilities spend up to 40% of their household income on caregiving, which includes at-home care, transportation, and childcare. They're also around twice as likely to report having trouble paying medical bills.
Caregiver Mental Health Toll
Raising a child with a disability can lead to extreme stress for caregivers. Ninety percent of parents report burnout, anxiety, and reduced self-care due to constant care demands. A study published in Disability Health Journey showed that parents of children with developmental disabilities were three times more likely to suffer from anxiety or depression than parents of children without these conditions. When you look only at global autism-caregiver numbers, the prevalence of depression rises to 45%.
Lost Therapies and Learning Regression
Another support crisis to discuss is the height of the COVID-19 pandemic. During that time, 60% of caregivers reported that they had access to reduced special education services, and 74% said they lost access to at least one therapy. From 2020 to 2022, Washington State found that it had missed close to 8,000 child evaluations and identifications—a 20% drop—which resulted in delayed or denied support services. In 2024, officials reported that they had resolved two-thirds of those cases. When services like these disappear, children often regress. Because of the delays in care, they may lose skills, such as speech or specific movements. Speech, occupational, and behavioral therapy all require regular attention and consistency to be effective. Families who lost out on those services now face legal battles if they want to fight to win compensation for the skills their children lost.
Policy Crossroads
2025 Federal Cuts on the Table
Project 2025 and the fiscal year 26 budget proposal both threaten to consolidate Title I and IDEA. They would also cut funding to the Department of Education’s budget by 15% and could begin to roll back protections for disabled students.
Another issue? Afterschool programs could also be cut. The proposed budget would eliminate all funding for 21st-century Community Learning Centers, which are federally funded programs responsible for serving high-poverty areas and low-performing schools during non-school hours. The change will affect approximately 1.4 million students across the United States.
What Advocates Want
Advocates are not just standing by and waiting to see the negative impacts. They are pushing back and asking for legislative fixes.
The IDEA Full Funding Act and the HCBS Access Act are two pieces of legislation that attempt to close the gaps in in-home care and educational support. “Eliminate the Wait” laws have gained a foothold in some states, like Kansas. Advocates push for these services to support reduced waitlist times for children in need.
National coalitions, such as the National Association of Elementary School Principals and the National Down Syndrome Congress, have supported funding IDEA. IDEA states that having access to full funding, or the 40% of K-12 per-student spending promised by Congress, would produce a return on investment. The current percentage is just 14%.
Taking additional steps could help, too. Steps such as increasing the SSA’s administrative budget, raising wages for direct support professionals, and requiring transparency through national, annual reporting of all Medicare waiver waitlists are all on the table. A new Centers for Medicare & Medicaid Services rule that starts in 2027 requires waitlist transparency.
What Families Can Do, Starting Now
Helping a child with a developmental disability can be difficult, even without the challenges of the system today. National Disability Alliance offers a free case evaluation that you can use to learn more about your options and what to do if you face delays or denials of SSI and SSDI.
Family Toolkit
- Apply for SSI.
- Learn about Medicaid HCBS waivers.
- Request an IEP evaluation.
- Connect with a disability lawyer.
