The Storm Is Already Here
What Disability Advocates and Parents Are Still Refusing to See
I’ve been thinking about what happens when both parents die. One young man in our community has, like so many before him, is dealing with this reality after both parents were killed in an accident. What follows is what will turn this horrifying scenario into something good. I hope it resonates with you. Have you filled out the COMPLIANCE COMPASS yet?
Systems rarely collapse without warning. First come the small failures we are encouraged to regard as unrelated: an employee trapped in onboarding, a support coordinator who cannot obtain an answer, an approved service that cannot be implemented, a fiscal intermediary that cannot process what it was hired to administer, a family forced to cover another unfilled shift.
Each incident is explained away as an inconvenience, a misunderstanding or an unfortunate exception.
But when the exceptions become ordinary, they are no longer exceptions.
The warning is not that New Jersey’s disability-services system may someday fail. The warning is that we have already begun treating its failures as normal.
A person-centered plan is approved, but the person cannot hire the staff necessary to implement it. A self-directed employee must complete standardized training, but the individualized instruction required to support the actual person is left to families and coworkers—unpaid. Team meetings may be essential for medication management, behavioral support and continuity of care, but the time required to hold them is not meaningfully recognized. Families are told they have employer and budget authority while wage restrictions, overtime policies, administrative delays and inadequate fiscal-intermediary systems sharply limit their ability to exercise either.
People with complex medical and behavioral needs encounter rigid limits on private-duty nursing, virtual supports and workforce flexibility. Support coordinators are expected to produce person-centered plans within a system that often gives them neither the authority nor the tools to secure person-centered outcomes. Families absorb the difference.
Meanwhile, provider agencies remain the system’s presumed infrastructure. Self-direction is treated as an alternative that individuals must prove they can manage, while provider-controlled services are treated as the natural default—even when those services are more restrictive, more expensive or incapable of delivering the life described in the person’s plan.
These are not separate problems.
They are the visible consequences of one problem most advocates and parents still refuse to confront: New Jersey’s system remains structurally provider-centered, administratively centered and institutionally self-protective—not person-centered.
Federal regulations say that the individual must lead the planning process, receive the support necessary to make informed choices, choose services and providers, and have a plan identifying the supports needed to achieve personally defined outcomes. The plan must be agreed to by those responsible for implementing it. Those requirements appear in 42 C.F.R. § 441.301. They are not philosophical aspirations.
Yet we have allowed person-centeredness to be reduced to a meeting, a form and a signature.
A plan that cannot be implemented is not person-centered. A choice that cannot be exercised is not choice. A budget that cannot purchase the necessary workforce is not control. A grievance process that people do not understand or are afraid to use is not accountability. A home in the community is not community integration if the person remains isolated, regimented or unable to control the ordinary dimensions of daily life.
The system has learned to satisfy the appearance of compliance while families struggle privately with the consequences.
But the harder truth is that the problem is no longer only what DHS, DDD, fiscal intermediaries, support-coordination agencies or providers are doing.
The problem is also what we have permitted ourselves to become accustomed to.
We complain privately and accommodate publicly. We describe the same failures in separate rooms as though each population were confronting a different system. Self-directing families talk to self-directing families. Group-home families talk to group-home families. Parents of medically fragile adults remain in one silo, those confronting behavioral-health needs in another, and those focused on employment, housing, support coordination or fiscal-intermediary failures in still others.
Every group becomes expert in its own wound while the structure producing all those wounds remains largely unchallenged.
We call this specialization. Too often, it is fragmentation.
We tell ourselves that our child is doing reasonably well, that we cannot risk upsetting a provider, that we have a good relationship with someone at DDD, that advocacy has become too political, that data collection is burdensome, that another family will speak, or that someone with more time will eventually take responsibility.
We say:
“My child is fine right now.”
“I am too overwhelmed.”
“I do not want to cause trouble.”
“I do not want to alienate the people we need.”
“Our organization has different priorities.”
“We tried that years ago.”
“This is not the right time.”
But the system’s future is being decided while we explain why we cannot participate in deciding it.
There is no criticism here of parents for being tired. Families have been expected to function as unpaid case managers, trainers, schedulers, employers, quality-assurance departments, crisis responders and last-resort providers. Their exhaustion is real.
But compassion for exhaustion cannot require us to pretend that exhaustion is a strategy.
The system depends on families being too busy surviving its failures to organize against the conditions producing them.
It depends on each family treating its crisis as personal rather than systemic. It depends on advocates competing for access, guarding their organizations, defending familiar service models and mistaking invitations to meetings for influence. It depends on our disagreements becoming more important than the shared transfer of power taking place around us.
For years, power has moved away from individuals and toward the entities that receive, administer and control public dollars. Providers have professional associations, paid executives, lobbyists, regulatory familiarity and permanent relationships with government. Families have stories—often devastating ones—but stories disappear unless they are gathered, documented, compared and converted into evidence.
When we decline to document what is happening, the system does not record our silence as exhaustion or fear.
It records silence as the absence of a problem.
When one family reports an onboarding failure, it is called an isolated error. When hundreds document the same delay, it becomes a performance failure. When one person cannot recruit workers under the permitted wage structure, it is called a difficult labor market. When the pattern is measured across counties, tiers and service models, it becomes evidence that approved services are functionally inaccessible.
The timing matters. Federal protections are not self-executing, and federal enforcement cannot be assumed to remain constant. In July 2026, the Department of Justice announced that it would reconsider its Olmstead guidance and would no longer rely upon that guidance in enforcing Title II while the review proceeds. The ADA and the Supreme Court’s Olmstead decision remain, but the DOJ announcement should end the comforting belief that someone in Washington will automatically rescue us from state-level failure.
At the same time, the Medicaid Access Rule creates stronger expectations concerning HCBS quality, grievances, incident management and public reporting. But regulations produce change only when people use them. Rights left undocumented and unenforced gradually become rights available only on paper.
We are also approaching decisions about New Jersey’s waiver, workforce structure and future service design. Whatever is embedded now may shape people’s lives for years. If families arrive late, divided into service-model factions and armed only with individual anecdotes, the institutional interests already at the table will define both the problem and its solution.
Those who refuse to adapt will not preserve the system they know.
They will preserve its weaknesses until someone else redesigns it without them.
It is time for our advocacy movement to grow up.
Growing up does not mean becoming angrier, crueler or reflexively adversarial. It means abandoning magical thinking. It means recognizing that cooperation without leverage is often consultation without consequence. It means understanding that a cordial meeting is not an outcome, a listening session is not shared governance, and a promise to “take the matter back” is not corrective action.
An adult advocacy movement does not measure success by how many officials agreed to meet with it. It asks what changed, who is responsible, when implementation will occur and how results will be measured.
It does not confuse personal access with institutional influence.
It does not allow personality conflicts, organizational rivalries or disagreements over service models to outrank the civil rights and future security of people with disabilities.
It does not defend a provider simply because one family currently has a good experience. Nor does it dismiss every provider family as an adversary. People in group homes, people living with relatives and people directing their own services share the same fundamental interests: safety, dignity, meaningful choice, adequate staffing, control over daily life, community membership and a plan capable of producing observable improvements.
The dividing line is not provider families against self-directing families.
The dividing line is between a system organized around the person and a system that requires the person to conform to whatever the system already operates.
We must stop fighting only the failure immediately in front of us. The wage restriction, the unpaid training, the missed team meeting, the support-broker limitation, the private-duty-nursing denial, the inaccessible virtual support, the broken fiscal-intermediary process and the unimplemented plan are branches of the same tree.
We must organize around the root.
That requires a shared accountability agenda across disability populations and service models. It requires collecting comparable evidence, demanding public outcome data, tracing grievances through resolution, measuring service interruptions and documenting the difference between services authorized and services actually delivered.
It requires asking whether people have real choices—not merely whether choices appear in a manual. It requires measuring community participation, employment, continuity of care, health and safety, staff retention and control over ordinary life. It requires following public dollars and asking whether expenditures produce the outcomes Medicaid promises.
It also requires accepting some uncomfortable responsibilities ourselves.
We must stop waiting for perfect agreement before acting. Coalitions are not built among people who think alike about everything; they are built among people mature enough to recognize what they cannot afford to lose.
We must stop expecting the same few parents to carry the research, organize the meetings, gather the stories, confront officials and absorb the criticism.
We must stop using fear of retaliation as a reason to leave every family isolated—because isolation is what makes retaliation possible.
We must stop declaring ourselves “not political” while budgets, regulations, waiver provisions and administrative decisions determine whether our family members can live safely in their own homes.
And finally we must stop assuming that because families have somehow held everything together until now, they will always be able to do so.
Parents age. Health changes. Savings disappear. Workers leave. Emergencies arrive. The unpaid labor concealing the system’s weaknesses will not last forever.
When that labor is no longer available, the consequences will not be theoretical. People will lose trusted workers. They will cycle through hospitals and psychiatric crises. They will be placed wherever a vacancy exists rather than where they choose to live. They will become more isolated, more medically vulnerable and more likely to enter restrictive settings.
The people who will pay most dearly for our refusal to adapt are those who have the least power to repair the damage later.
This is not a call to abandon collaboration with DHS or DDD. It is a demand that collaboration become real. “Power with” requires shared information, shared problem definition, meaningful participation before decisions are made and accountability after they are implemented. It requires government to regard people with disabilities and families as system architects—not merely as stakeholders invited to react to what others have already designed.
But partnership requires both parties to arrive with power. Our power will come from organized people, credible evidence, legal clarity, political engagement and a refusal to be divided into administratively convenient silos.
The storm is not somewhere offshore. It is present in every approved plan that cannot be implemented, every family silently filling a staffing gap, every person steered toward a provider because self-direction was made unnecessarily difficult, and every policy decision made without those who must live with its consequences.
We can continue explaining why collective action is inconvenient. We can keep protecting relationships that have not protected our rights. We can keep revisiting the same complaints while expecting a different system to emerge.
Or we can recognize that people with disabilities do not have another decade to wait for us to become ready.
It is time to stop behaving like grateful petitioners and begin acting like an organized constituency.
No more treating systemic failures as individual misfortunes.
No more allowing separate service models to divide people with the same fundamental rights.
No more mistaking paperwork for person-centeredness, consultation for participation or promises for progress.
No more relying on families to conceal the true cost of an inadequate system.
And no more excuses for refusing to adapt while the future is being decided around us.
The old methods have brought us to this moment. They will not carry us through it.
We must tell the truth, collect the evidence, build the coalition and insist that services adapt
to people—not the other way around.
That is not radicalism.
It is adulthood.
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