HOW TO WIN

Hello Community,

This summer, I asked one of our interns to examine a simple but important question: Where has disability advocacy produced real, measurable change across the country—even in today’s deeply challenging environment?

The findings are encouraging. 

Advocates have stopped harmful cuts, restored services, protected self-direction, reversed unlawful decisions, and forced systems to respond. Those victories were not accidental. They came from many of the same strategies we have been building together: documenting patterns, combining individual experiences into collective evidence, demanding accountability, and refusing to accept rights that exist only on paper.

A summary of those gains appears below.

Please take a few minutes to complete the Compliance Compass. It is not simply another assessment. It is the foundation for turning individual experiences into the credible, measurable evidence that successful advocacy requires.

Our stories matter. Our collective data gives them power.

The clearest pattern in successful advocacy is this:

Systems rarely volunteered these gains. Progress came after people testified, organized, litigated, exposed failures publicly, or made the political cost of inaction too high.

Strongest advocacy gains

1. Maryland advocates stopped the most dangerous proposed budget cap

Maryland’s governor proposed approximately $150 million in Developmental Disabilities Administration cuts, including a $500,000 cap on individual person-centered plan budgets.

Families, disability organizations, caregivers, and legislators pushed back. The Senate:

• reduced the proposed cuts by about $23–24 million;

• transferred additional general funds into the disability budget; and

• rejected the $500,000 cap entirely.

The Arc Maryland’s executive director described the result plainly: “They heard us.”

This was not a total victory—self-directed wages and family-caregiver hours remained

under threat—but advocates prevented a blunt ceiling that could have forced people with the most significant needs into institutions.

What worked: testimony tied the proposed cap directly to institutionalization, continuity of care, workforce loss, and violation of person-centered planning—not merely to dissatisfaction with a budget decision.

2. Maryland restored coverage after litigation exposed wrongful disenrollment

Four Medicaid recipients and The Arc Montgomery County filed a class-action lawsuit after people receiving developmental-disability waiver services were allegedly disenrolled:

• without adequate notice;

• through notices sent to incorrect addresses;

• without meaningful due process; and

• in some instances, through notices citing nonexistent legal provisions.

The Maryland Department of Health subsequently acknowledged that it had restored coverage for 263 people who had been erroneously disenrolled and began a broader review.

This is one of the archive’s strongest examples of accountability producing a measurable result.

The system called it redetermination. Advocates demonstrated that it was deprivation without due process.

What worked: identifying a pattern, documenting concrete procedural defects, joining individual harm to organizational evidence, and moving from informal complaint to class-based legal action.

3. Earlier Maryland organizing restored $143 million

In the prior Maryland budget fight, the state initially considered approximately $200 million in DDA cuts. Following advocacy and legislative intervention, a supplemental budget restored $143 million.

This later became important because advocates entered the next budget fight with proof that:

• cuts were not inevitable;

• the legislature could intervene;

• disability funding could be restored; and

• persistent pressure had already worked once.

It also demonstrates the value of institutional memory. Each campaign should preserve its evidence, testimony, coalition, and legislative relationships for the next fight.

4. Connecticut advocates forced a proposed elimination of Community First Choice into a public political fight

Connecticut’s governor proposed sunsetting Community First Choice, which allows approximately 7,000 people to receive home-based services and select their own workers without waiting for a waiver slot.

Advocates immediately reframed the proposal as:

• replacing an entitlement with capped access;

• creating waits of three to ten years;

• increasing the likelihood of institutionalization; and

• shifting costs rather than saving money.

The archive documents:

• organized public opposition;

• legislative pushback from the Appropriations Committee;

• direct engagement with the governor;

• sustained media coverage; and

• families refusing the state’s assurance that current participants would supposedly remain protected.

At the time of the newsletter, the final result was not yet reported. Still, advocacy had already changed the terrain: what might have passed as a technical budget adjustment became a highly visible civil-rights and institutionalization issue.

Important gain: stopping quiet administrative action from remaining quiet.

5. New Mexico eliminated a 13-year developmental-disability waiver waitlist

New Mexico moved from a wait exceeding 13 years to a funded “no wait list” policy for its comprehensive DD and Mi Via waivers. Approximately 700 people, including individuals on the interim Supports Waiver, were offered access to the comprehensive DD Waiver or Mi Via, New Mexico’s self-direction option.

The archive attributes the operational change to a state “Super Allocation” strategy and sustained legislative funding.

While the newsletter does not isolate one advocacy organization as the sole cause, a shift of this scale does not occur without years of pressure from families, people with disabilities, advocates, and stakeholders insisting that waiting indefinitely is not access.

A waitlist measured in decades was treated as policy—until sustained pressure made it indefensible.

This is especially useful for New Jersey advocacy because it proves that very large access failures can be solved through deliberate allocation, legislative funding, and administrative priority.

6. Veterans’ home-care advocacy produced a major federal expansion

The Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act increased the amount the VA may pay for noninstitutional home care from 65% to as much as 100% of the cost of comparable nursing-home care.

Covered noninstitutional options include:

• Veteran-Directed Care;

• home health aide services;

• respite;

• skilled home health;

• adult day health; and

• PACE.

The measure was described by home-care advocates as a major victory.

The significance goes beyond veterans:

The policy recognizes that paying adequately for care at home is not an optional kindness. It is a legitimate alternative to institutional expenditure.

That directly supports the argument that government should compare self-direction and HCBS funding to the cost avoided through nursing-facility placement—not to an artificially low historical home-care rate.

7. Disability-rights litigation restored White House ASL interpretation

After the administration stopped providing real-time American Sign Language interpretation at presidential briefings, litigation resulted in a federal judge ordering the White House to restore it.

The court rejected the idea that captions and later transcripts were sufficient substitutes for contemporaneous access.

This is not a self-direction program change, but it reflects the same larger advocacy principle:

• accessibility must be effective;

• substitutes cannot be imposed unilaterally;

• administrative convenience does not erase civil rights; and

• courts can compel implementation when government assurances are inadequate.

8. Advocacy forced Minnesota to narrow the apparent scope of a Medicaid payment freeze

Minnesota initially announced what appeared to be a sweeping pause in payments across 14 Medicaid service categories during a fraud review. Providers, advocates, and affected communities immediately raised alarms about service interruption and the survival of legitimate programs.

The state then clarified that payments would not be stopped across the board, but would be paused only for identified outliers.

This was not a complete resolution, and serious concerns remained. But the immediate response prevented an indiscriminate action from proceeding under its original public interpretation.

Lesson: broad “fraud prevention” language can hide collective punishment. Rapid advocacy must force the state to specify:

• who is affected;

• what evidence triggers action;

• what appeal rights exist;

• how continuity of care will be protected; and

• whether innocent participants and workers will bear the cost.

9. New York scrutiny exposed contradictions in the CDPAP procurement

New York’s consolidation of the Consumer Directed Personal Assistance Program under a single fiscal intermediary generated:

• legislative hearings;

• media investigations;

• testimony from participants and workers;

• challenges to late pay and failed onboarding;

• scrutiny of the procurement process; and

• demands for disclosure concerning pre-award communications.

A company official’s later acknowledgment of communications with state officials contradicted earlier testimony. A state senator publicly characterized this as a significant reversal and pressed for further review.

The archive does not show that the entire consolidation was overturned. The gain was accountability: advocates prevented the state’s preferred narrative from becoming the uncontested record.

Exposure is not the final victory, but it is often the point at which an untouchable policy becomes politically vulnerable.

10. Historical organizing remains the foundation: Section 504 and accessible transit

The July 2026 newsletters deliberately reconnect present-day advocacy with earlier victories:

• the 1977 Section 504 sit-in, which forced implementation of federal disability protections; and

• Denver’s “Gang of 19” transit protest, which helped secure accessible public transportation and contributed to the movement that produced the ADA.

These stories matter because they correct a dangerous misunderstanding: major disability rights were not awarded because officials gradually became more enlightened.

They were won because disabled people and allies:

• disrupted normal operations;

• refused symbolic consultation;

• made exclusion visible;

• stayed organized after initial refusals; and

• converted lived experience into enforceable rights.

Positive but partial gains

Several examples in the archive should be described as partial victories, not full successes:

• Maryland advocates reduced DDA cuts and stopped the individual budget cap, but self-directed worker wages still faced reductions.

• Connecticut advocates created serious resistance to ending Community First Choice, but the archive does not establish a final withdrawal of the proposal.

• Minnesota narrowed the apparent payment freeze, but flagged providers could still face interrupted payments.

• New York advocates exposed procurement and implementation failures, but the single-fiscal-intermediary structure remained.

• Connecticut advocacy following the death of a child on the Katie Beckett waitlist produced legislative recommendations to eliminate the waitlist, but the archive does not confirm complete implementation.

• Pennsylvania workers rallied for higher wages and paid leave, but the newsletters do not establish that the full requested funding was enacted.

That distinction is important. Government frequently presents:

• a hearing as participation;

• a workgroup as reform;

• a recommendation as implementation;

• a smaller cut as an investment; or

• restoration of something wrongfully taken as generosity.

What advocacy tactics repeatedly worked

Across the archive, the most effective campaigns did five things.

They translated policy into human consequence

Advocates did not argue only about reimbursement methodology. They showed that the proposed action meant:

• losing a trusted worker;

• entering a nursing home;

• waiting ten years for care;

• losing employment;

• separating from family; or

• going without essential assistance.

They challenged the state’s economic story

Successful advocates repeatedly demonstrated that cutting HCBS does not eliminate need. It redirects people into:

• hospitals;

• emergency departments;

• nursing facilities;

• crisis systems; and

• unpaid family care.

The strongest message was not merely “cuts are cruel.”

It was:

Cuts to self-direction often cost government more while producing worse outcomes.

They used multiple pressure points simultaneously

The gains did not come from one polite meeting. They came through combinations of:

• public testimony;

• legislative allies;

• press coverage;

• lawsuits;

• coalition letters;

• data;

• direct participant stories;

• administrative complaints; and

• budget advocacy.

They demanded measurable correction

The clearest victories had numbers attached:

• 263 people restored to Medicaid coverage;

• $143 million restored;

• a $500,000 cap rejected;

• approximately 700 people offered waiver allocations;

• a waitlist of more than a decade eliminated; and

• home-care funding authority raised from 65% to 100% of comparable institutional cost.

They framed community living as a right, not a program preference

The campaigns became stronger when advocates connected self-direction to:

• due process;

• informed choice;

• community integration;

• institutionalization risk;

• continuity of care;

• equal access; and

• the right to control who enters one’s home and provides intimate support.

The central conclusion for NJSDA

The archive supports a forceful strategic message:

Pushback works—but only when lived experience is converted into evidence, evidence into public accountability, and public accountability into a specific demand that decision-makers cannot evade.

The strongest gains did not arise from stakeholders being invited to comment after the decision was substantially made. They arose when advocates challenged the state’s premises, exposed the consequences, built legislative or legal leverage, and insisted upon an observable correction.

For New Jersey, the practical lesson is clear:

• Do not present each family’s problem as an isolated service complaint.

• Aggregate the pattern.

• Tie it to the person-centered plan, access, due process, community integration, and measurable outcomes.

• Calculate the institutional and crisis costs created by the policy.

• Identify the official with authority to correct it.

• Demand a remedy that can be counted, dated, and independently verified.

The system’s greatest protection is fragmentation. Advocacy’s greatest power is proving that what happened to one person is not an exception—it is the operating pattern.