NJ Chapter - National Council on Severe Autism

09/04/2026

18 US Governors just wrote to the DOJ to 💪defend the rights 💪of our loved ones.

‼️Thank you NJ Governor Mikie Sherrill, and to all the other signers for being there for our community!

"👉Red and blue states have spent decades investing in home and community based services, developing supportive housing, expanding access to education and employment opportunities, and redesigning and strengthening community based services. These efforts reflect not only our progress under federal civil rights law, but our shared conviction that 👏🏼people with disabilities belong in their communities, whenever possible."

Note the 👉WHENEVER POSSIBLE part -- this is not about forcing people into the community but an obligation to enable it when and where it is appropriate.

09/02/2026

🚨 BREAKING: DOJ just asked a federal judge to erase disabled Americans' legal right to live in their own communities.

To be clear: states have long misapplied the Olmstead ruling to deny congregate care to people with profound needs. This filing doesn't fix that. It makes things worse for everyone.

⚖️ On September 1, 2026, DOJ asked a federal judge to permanently delete the "integration mandate" — the rule requiring disability services be delivered in the most integrated setting appropriate. DOJ is no longer defending this rule. It's now on the states' side, suing to kill it. In its own filing, DOJ says:

"Neither section 504 of the Rehabilitation Act nor Title II of the Americans with Disabilities Act imposed an integration mandate on states."

If signed, this wipes out: 👇

The federal definition of "most integrated setting"

The requirement to prioritize community-based services

The entire community-integration provision of Section 504

💰 This is really about money. The integration mandate is the legal tool families use to fight funding cuts to home aides, respite, day programs, and group home staffing — the Medicaid HCBS waivers that let people stay in their own homes instead of institutions. As major Medicaid cuts roll out, erasing this mandate removes families' strongest legal defense against losing that funding.

A judge still has to sign this. But it's no longer just a legal memo — it's sitting on a federal judge's desk, agreed to by the agency meant to enforce disability rights.

📢 Not a moment for panic. A moment to build awareness. Real choice requires real protection.

08/30/2026

📋 THE WEEKLY BRIEFING — News Impacting the Severe Autism Community in NJ and Beyond | August 24–30, 2026

New Jersey stepped up this week with a significant new investment in crisis care, and a long-overdue hospital rights bill is gaining traction in Trenton. Meanwhile, in Washington, a federal autism advisory committee approved an ambitious new plan — but advocates are already asking a hard question: where are the dollars for profound autism?

Read More:

🏛️ NJ Invests $16.45M in Crisis Stabilization Centers — But Will They Serve Our Community? — New Jersey Human Services announced $16.45 million to support Crisis Receiving and Stabilization Centers statewide, strengthening the behavioral health crisis response system for individuals reaching the 988 Su***de and Crisis Lifeline. It remains to be seen to what degree, if at all, these centers will be equipped to serve individuals with severe autism and complex IDD needs. For families whose loved ones' behavioral crises too often end in the ER, that question matters enormously. (NJ DDD / NJCDD, August 19, 2026)

⚠️ NCSA Raises Alarm Over Federal Autism Plan's Definition of Profound Autism — The federal Interagency Autism Coordinating Committee voted August 27 to adopt its 2026–2028 Strategic Plan, calling for nearly $760 million in annual federal autism investment. But national NCSA is raising a critical concern: the plan's definition of profound autism excludes intellectual disability as a qualifying pathway — departing from both the Lancet Commission and the 2026 international Delphi consensus of 137 experts. NCSA warned that an inconsistent definition makes it impossible to measure whether any of these programs actually reach the people they are designed to serve. Advocates also note the draft plan named "profound autism" more than 45 times while allocating zero dedicated dollars to it. (Reuters, August 27, 2026 / NCSAutism.org, August 22, 2026)

💔 Minnesota Group Home Owner Collected $36M in Taxpayer Funds — While Living Overseas — An investigation by APM Reports found that a Minnesota group home operator received $36 million in public money over the past decade to care for disabled adults — even as residents died and neglect findings mounted, and even after he took a government job in Liberia, more than 5,000 miles away. In one case, a resident died after staff failed to start CPR and called a nurse instead of 911. State investigators found neglect. The facility is still operating. Minnesota law caps fines at just $5,000 per substantiated maltreatment finding. (APM Reports, August 17, 2026)

📰 NJ Hospital Bill Would Give Families the Right to Stay — A bill advancing in the NJ Legislature (A2259) would authorize hospital patients with developmental disabilities to have a designated family member, guardian, direct support professional, or other caregiver accompany them throughout their hospital stay. For individuals with severe autism who cannot communicate their needs verbally, the presence of a trusted caregiver is not a comfort — it is a clinical necessity. Diagnostic overshadowing is a documented, life-threatening risk. This bill matters. (NJ Legislature, 2026)

💉 Trump Signs Order Cutting Childhood Vaccine Schedule, Citing Autism — President Trump signed an executive order August 10 reducing the federal childhood vaccine schedule from 17 to 11 shots and directing the MMR vaccine be separated into three separate injections — citing an unproven link to autism. The CDC states that studies across millions of children have found no such connection. The order also directs the DOJ to challenge state school vaccination requirements. Pharmaceutical companies say separating the MMR vaccine could take years to implement. (USA Today / Reuters, August 24, 2026)

👉 Follow NCSA-NJ for weekly updates on the issues that matter most to our community. Share this post to help spread the word.

ℹ️ About NCSA-NJ: The NJ Chapter of the National Council on Severe Autism (NCSA-NJ) advocates for individuals with severe autism and profound intellectual and developmental disabilities, and for their families and caregivers. We push for safety, accountability, and meaningful services at the state and federal level. NCSA-NJ is nonpartisan and does not endorse any candidate or political party. We recognize and appreciate support for our community from elected officials on both sides of the aisle.

08/29/2026

An important, albeit distressing, read from our friends at the Autism Science Foundation.

In its second meeting, federal autism committee advances plan that may stymie promising research

08/28/2026

Thanks to everyone who submitted comments in support of a more appropriate ICAA plan. Seems like we’re having an impact.

We are on the ground at the Interagency Autism Coordinating Committee at the NIH this morning and have good news to share: Your positive advocacy specific to profound autism research has had an impact.

The National Autism Coordinator announced this morning that NIH will be focusing specifically on our population. (Slide shown.)

We'll provide more details as we learn them, but it important to acknowledge this announcement. Thank you to the IACC and the NIH.

08/26/2026

🚨 Our community includes some of the most vulnerable people in New Jersey. What we're fighting for isn't complicated: keeping our loved ones safe, holding accountable those who abuse or neglect them, and making sure the funds spent on their care are spent wisely. 💙

Simple goals. A complicated path to get there. Real solutions mean balancing competing needs, costs, and practical realities — which is exactly why progress has been so hard to come by.

Yesterday, NCSA-NJ's leadership team met with Senator F. McKeon. 🤝 We're grateful he took the time to hear our concerns — he listened closely, was genuinely concerned, and engaged us in a meaningful conversation about what's needed to help make our goals a reality.

NCSA-NJ is a nonpartisan organization. We don't endorse candidates or political parties — we recognize and work with any elected official, regardless of party, who is willing to fight for our community. 🇺🇸

John F. McKeon

08/23/2026

📋 THE WEEKLY BRIEFING — News Impacting the Severe Autism Community in NJ and Beyond | August 17–23, 2026

A federal research plan that found room to name our community 45 times but not a single dedicated dollar. NJ dropped criminal charges against a major group home provider despite years of documented neglect. And at least 18 states have already cut or proposed cuts to home and community-based services due to federal Medicaid funding reductions. Here's what happened this week.

Read More:

⚠️ NJ State Drops Criminal Charges Despite Years of Neglect — New Jersey appointed an independent monitor to oversee Elwyn, one of the state's largest group home companies, this week — and simultaneously dropped neglect charges against the company and sought no fines. The charges stemmed from a resident being left on the floor for nearly seven hours without assistance. In exchange for a three-year consent agreement, Elwyn will fund the monitor itself. The state also lifted the admissions moratorium it had imposed in May 2025 — allowing Elwyn to begin accepting new residents again — despite a documented record of 525 staff shortages, 192 neglect allegations, and 99 injuries over the past two and a half years. A resident died. No fines. No criminal convictions. A monitor. (NorthJersey.com, August 18, 2026)

🔬 Federal Autism Plan Names Profound Autism 45 Times — Funds It Zero — The public comment period closed August 20 on the federal government's 2026–2028 IACC Strategic Plan, the roadmap for national autism research and policy. The 336-page draft proposes $357 million in new funding — including $57 million for neurodevelopmental regression. Profound autism is named 45 times. It received zero dedicated dollars. Advocates including the Profound Autism Alliance submitted comments demanding that be corrected before the plan is finalized. (Profound Autism Alliance / IACC, August 20, 2026)

📰 Growing Push to Make Profound Autism Its Own Diagnosis — A new AP report examines the growing movement to establish profound autism as a separate diagnosis, distinct from the broader autism spectrum. Advocates argue that without a distinct classification, people who require lifelong, around-the-clock care are routinely overlooked in research funding, service planning, and policy. The story centers on families raising twins with profound autism and highlights the urgency of getting this right. (AP News, August 21, 2026)

💔 18 States Have Already Cut or Proposed HCBS Cuts — At least 18 states have proposed or enacted cuts to home and community-based services since the One Big Beautiful Bill Act passed, as states absorb reduced federal Medicaid funding. Because HCBS is an optional Medicaid benefit — unlike nursing home care, which states must fund — it is historically the first thing cut when budgets tighten. Hundreds of thousands of people with disabilities are already on waiting lists for these services. NJ faces its own structural Medicaid deficit beginning in 2027. (Caring Across Generations, July 2026)

🚨 HHS Launches National Autism Missing Person Alert Initiative — HHS announced a new federal initiative to improve emergency response when autistic individuals go missing, partnering with DOJ and FEMA to coordinate law enforcement and first responders nationwide. The program will establish best practices addressing the leading causes of preventable death among autistic people, including accidental drowning. HHS Secretary Kennedy acknowledged the system is still in the design phase. (HHS.gov / The Hill, August 21, 2026)

👉 Follow NCSA-NJ for weekly updates on the issues that matter most to our community. Share this post to help spread the word.

ℹ️ About NCSA-NJ: The NJ Chapter of the National Council on Severe Autism (NCSA-NJ) advocates for individuals with severe autism and profound intellectual and developmental disabilities, and for their families and caregivers. We push for safety, accountability, and meaningful services at the state and federal level. NCSA-NJ is nonpartisan and does not endorse any candidate or political party. We recognize and appreciate support for our community from elected officials on both sides of the aisle.

08/22/2026

If you don’t already subscribe to the Autism Science Minutes you may want to.

08/21/2026

Check out Nationals new website. ❤️❤️❤️👍🏻👍🏻👍🏻👏👏👏

SURPRISE! 🎉 NCSA has just launched its rebuilt website. Head over to NCSAutism.org and check it out. Let us know what you think. We will continue to migrate content, and there will likely be a few bugs to work out in coming weeks, but we are so excited to share this update with you.

The old site grew with us over eight years. The new one was built for what the work has become: a national policy record and a national advocate network for families whose children, siblings, and adult dependents need continuous, lifelong support.

Three things we built the new site to do:
1. Put families first
2. Make the record findable
3. Make taking action easy

The new site got a major accessibility upgrade, and our donation options have received an upgrade, too. We can now accept digital wallet apps, DAFs, crypto, and stocks as easily as cards.

Head to NCSAutism.org to take a look. Do you have a favorite page or feature? We'd love to hear! If you encounter any broken links or bugs, please notify Jackie at [email protected].

08/19/2026

We've gotten a lot of questions about this post. 👍 Good. 👍That means people are paying attention. Here are our answers.

❓ Q: The law hasn't changed. Why does this matter?
A: The law itself hasn't changed — Olmstead is still Supreme Court precedent and the ADA is still in effect. But federal enforcement has changed, and that matters enormously. The DOJ issued an internal legal opinion telling federal agencies they no longer need to enforce the integration mandate. That deterrent is now gone.
And it isn't hypothetical — Texas, Alaska, and Florida are already in federal court arguing they have no obligation to provide community services at all.
When the ref leaves the field, the game changes. The law being technically intact doesn't help a family whose services get cut and has no federal enforcement agency willing to fight for them.

❓ Q: Wasn't Olmstead forcing people out of settings they needed?
A: That concern is real — some states did use Olmstead compliance as cover to thwart facilities our loved ones needed and their families wanted. We don't dismiss that.
But this opinion doesn't restore a single congregate care bed or protect anyone's right to choose congregate care.
What it does is remove the enforceable federal right to home care, supported living, and behavioral support for families who depend on those services to stay out of institutions they don't want. It doesn't restore choice. It removes a protection.
⚖️The Supreme Court was clear and their ruling should be enforced:
"Unjustified isolation is properly regarded as discrimination based on disability."
— U.S. Supreme Court, Olmstead v. L.C. (1999)

❓ Q: Aren't you just rage baiting with this post?
A: Fair question — and we'd rather answer it than ignore it. The quote in the opening is real, verbatim, from a letter signed by 100 members of Congress. The court case is real. The DOJ opinion is real and publicly available. The states' legal arguments are pulled directly from their own court filing. We linked every source in the first comment. We don't have any interest in alarm for alarm's sake — we have loved ones whose services depend on these protections.

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ℹ️ NCSA-NJ is nonpartisan and does not endorse any candidate or political party.