"We're Here: Then, Now, Always" — Honoring Developmental Disabilities Awareness Month

March is National Developmental Disabilities Awareness Month (DDAM) — an annual call to action rooted in a 1987 presidential proclamation recognizing the needs and potential of Americans with developmental disabilities. This year's national theme, adopted by the National Association of Councils on Developmental Disabilities (NACDD), is "We're Here: Then, Now, Always." It connects decades of hard-won progress to present urgency: community living and inclusion must be protected, funded, and expanded — not rolled back.

At Shared Horizons, this month holds deep resonance. The individuals and families we serve — many of whom live with intellectual disabilities, autism, cerebral palsy, Down syndrome, and other developmental conditions — depend not only on day-to-day support, but on sound financial and legal infrastructure to ensure their futures are protected.

What Is a Developmental Disability?

A developmental disability is a lifelong condition that emerges before age 22 and substantially limits functioning in areas such as self-care, language, learning, mobility, self-direction, and independent living. Common developmental disabilities include:

•       Intellectual Disability (ID)

•       Autism Spectrum Disorder (ASD)

•       Cerebral Palsy (CP)

•       Down Syndrome

•       Fetal Alcohol Spectrum Disorders (FASDs)

•       Epilepsy and seizure-related conditions

According to the CDC, approximately 1 in 6 children in the United States has a developmental disability. Many will require lifelong support — including financial, housing, and benefits-related assistance.

What This Means for Families, Guardians & Legal Professionals

For families, a developmental disability diagnosis often triggers a series of critical long-term planning questions. How do we ensure our loved one is cared for when we are no longer able? How do we preserve their eligibility for Medicaid and Supplemental Security Income (SSI) while still improving their quality of life?

For guardians and conservators, it means navigating complex benefit structures and trust instruments — often without a clear roadmap. For trial lawyers and settlement planners, a developmental disability diagnosis changes how a personal injury or malpractice settlement must be structured to avoid disqualifying a beneficiary from public benefits.

This is exactly why tools like a Pooled Special Needs Trust (PSNT) exist — and why organizations like Shared Horizons serve such a vital function in the disability planning ecosystem.

The Law That Protects Them: 42 U.S.C. § 1396p(d)(4)(C)

Federal law under 42 U.S.C. § 1396p(d)(4)(C) authorizes Pooled Special Needs Trusts — managed by nonprofit organizations — that allow individuals with disabilities to maintain their Medicaid and SSI eligibility while holding funds that supplement (not replace) government benefits.

What this means for families: Money placed in a Pooled SNT does not count against the SSI asset limit ($2,000 for an individual) or trigger Medicaid disqualification — as long as distributions are used for supplemental needs like education, recreation, transportation, and personal care.

What this means for attorneys: When settling a personal injury case for a client with a developmental disability, directing proceeds to a Pooled SNT protects both the settlement and the client's public benefits.

What this means for State Disability and Public Benefit agencies: Pooled trusts are a recognized and federally compliant mechanism for asset management. They reduce Medicaid estate recovery obligations and support community integration.

What this means for educators and IEP teams: Trust funds can legally supplement special education services — funding assistive technology, therapies, community programs, and transportation — without jeopardizing benefit eligibility.

How Shared Horizons Supports the DD Community

As a nonprofit pooled special needs trust administrator based in Washington, D.C., Shared Horizons manages sub-accounts for individuals across the developmental disability spectrum. We work alongside families, guardians, conservators, attorneys, and state agencies to ensure every beneficiary's trust is properly structured, compliant, and used to enhance — not endanger — their quality of life.

This month, we invite you to:

• Share information about developmental disabilities with your community

• Connect families to Shared Horizons if they need trust planning guidance

• Advocate for sustained federal and state funding for DD services and supports

• Learn more at www.nacdd.org and www.thearc.org

  
  

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Citations & Resources

1. National Association of Councils on Developmental Disabilities — 2026 DDAM Theme: nacdd.org

2. The Arc — Developmental Disabilities Awareness Month 2026: thearc.org

3. CDC — Developmental Disabilities: cdc.gov/ncbddd/developmentaldisabilities

4. 42 U.S.C. § 1396p(d)(4)(C) — Pooled Special Needs Trust authority

5. Social Security Administration — SSI Resource Limits: ssa.gov/ssi