01/05/2026
Please pay attention and let your state Reps and Senators know your concerns!
Federal Policy Update - Issues Affecting People with Down Syndrome (Updated January 2, 2026)
1 — Special Education
Continued staffing reductions and structural changes at the U.S. Department of Education—particularly within the Office of Special Education and Rehabilitative Services (OSERS) and the Office for Civil Rights (OCR)—have further weakened federal enforcement of IDEA and Section 504. As of January 2026, OCR complaint backlogs have grown, technical assistance to states and districts has slowed, and families face longer timelines when attempting to resolve special education and discrimination concerns.
Impact: Reduced federal oversight has delayed resolution of violations and diminished accountability for schools and states placing more pressure on families to advocate without strong federal back-up.
2 — Medicaid & Home- and Community-Based Services (HCBS)
Major Medicaid changes enacted in 2025 budget legislation are now moving from proposal into phased implementation, with states preparing for new requirements throughout 2026 and beyond. There is continued federal pressure to reduce long-term Medicaid spending, including HCBS waiver programs. In addition, more frequent eligibility redeterminations and new verification requirements, increasing the risk of procedural disenrollment.
Impact: These changes could lead to increased service disruptions, longer waitlists, reduced hours of care, and greater instability for individuals who depend on Medicaid to live safely and independently in their communities.
3 — Medicaid Waivers Flexibility for States
The federal government continues to expand the use of Section 1115 Medicaid waivers, granting states broader authority to test changes to eligibility, benefits, and service delivery. This shift increases the likelihood of state-by-state variation in access to services. Federal oversight of these waivers has become less prescriptive, placing more responsibility on states and advocates to identify and challenge harmful changes.
Impact: We are watching this, not necessarily bad to have more flexibility in a state like MN which has historically been on the more supportive end of services. However, with budget pressures during the most recent MN legislative sessions and scrutiny of MN Medicaid programs in general, this is on our radar.
4 — Threats to Transition & Employment Programs
Due to staffing and restructuring, there is reduced capacity at the federal level limits technical assistance, monitoring, and investment in Pre-employment transition services, vocational rehabilitation supports, and competitive integrated employment pathways. Some targeted or competitive grants continue, they do not offset the broader erosion of transition and employment infrastructure.
Impact: Reliance on targeted or competitive grants could prove detrimental to MN as we are not a favorite of the federal administration. Youth and adults with Down syndrome could face fewer supported pathways into employment causing increased reliance on family support.
5 — Disability Rights Enforcement Slowdown & Expanding Legal Uncertainty
Across education, healthcare, and employment, federal civil-rights enforcement remains strained. Staffing shortages, policy shifts, and ongoing litigation have created a climate in which disability rights are increasingly dependent on legal challenges rather than proactive enforcement. The broader trend signals a weakening of federal leadership in enforcing disability nondiscrimination laws.
Impact: Even where legal protections remain on paper, families face greater difficulty asserting their rights in practice due to delays, limited enforcement capacity, and increased reliance on costly legal remedies.
What This Means for the Down Syndrome Community
For Children
- Increased risk of IEP violations and delayed special education services.
- Slower federal response to discrimination and compliance concerns.
- Greater reliance on parents to navigate enforcement gaps.
For Adults
- Growing instability in Medicaid-funded supports, including HCBS and employment services.
- Fewer federally supported transition and workforce pathways.
- Increased barriers to independent living and community participation.
For Families
- More responsibility to monitor services, maintain eligibility, and advocate across fragmented systems.
- Increased stress as federal safeguards weaken and decision-making shifts to states
- Greater importance of strong state-level advocacy and nonprofit support organizations.
