Your Story Matters
Dear Community,
At every genuine moment of possibility for self-determination, authentic hope begins with an honest accounting. If self-determination and authentic person-centeredness are to become more than slogans—if they are to be woven into the reality of daily life—we must be willing to hold success and failure together. Gratitude and grievance. Progress and critique.
That means speaking not only about what sustains us, but also about what has failed us—because both belong to the truth. Insisting on the good while refusing to name the harm is not optimism. It is silence, and that silence impoverishes our understanding, weakens our collective power, and protects the system from accountability.
I am asking all 30,000 people receiving DDD services—and their families—to become curious about silence.
Where are you remaining silent?
How have you been taught to remain silent?
Where has the system silenced you so thoroughly that you have begun to accept the unacceptable as normal?
And if you have been in this system for fewer than ten years, you especially need to understand what I am sharing now. The conditions you are encountering did not appear overnight. They are the result of years of decisions, exclusions, incentives, and failures of accountability.
Imagine sitting with a family during a person-centered planning process and inviting them to speak only about what works.
Think of everything that would be lost.
The failed services. The unmet needs. The plans that were approved but never implemented. The staff who never arrived. The budgets that could not be used. The fear of retaliation. The hours, days, and years spent fighting for what had already been promised.
That hard-won knowledge matters. What did not work often teaches us more than what did. It shows us where the system breaks, where rights are denied, and where future choices must lead.
If self-determination and authentic person-centeredness are to become more than slogans—if they are to be woven into the reality of daily life—we must be willing to hold success and failure together. Gratitude and grievance. Progress and critique.
Both are necessary.
When the Murphy administration began, many of us believed meaningful change was possible. Yet people with intellectual and developmental disabilities were never treated as a true priority by the administration or the Legislature—not even when people were suffering, services were failing, and lives were being lost.
Has that changed?
Based on what we have seen thus far under the Sherrill administration, it does not appear so.
Let us also be clear: this is not a Democratic issue or a Republican issue.
It is a give-a-damn issue.
For years, the State’s answer was “fee-for-service.”
We were told that everything else had to wait because fee-for-service was difficult, complicated, and all-consuming. Families were expected to be grateful that the State was working so hard on our behalf.
Today, the answer is “HH1.”
Again, we are told that implementation is expensive, complicated, and so demanding that there is no time to address anything else. Again, families are expected to comply, remain quiet, and be grateful.
The project changes.
The excuse does not. Let's also be clear. Both fee-for-service transition and HH1 are more work, complicated and difficult. But this is the State's J-O-B, for which administrations wanted and asked to be elected to do.
While families have been consumed by one implementation crisis after another, power has steadily shifted away from people and into the hands of provider agencies. For fifteen years, that power has been siphoned through a vacuum created by systemic secrecy, barriers to genuine person-centeredness, and policies that divide people into silos. The result is fragmented advocacy, weakened collective power, and a community so occupied with surviving the system that the larger transfer of control has gone largely unseen.
What little influence individuals and families possessed was diminished. Provider agencies became more deeply embedded in policy, planning, and decision-making. The result is a suppression triangle that keeps people in group homes and people using self-direction divided, while protecting a provider-centered system from meaningful challenge.
Here is the truth that many people are reluctant to say plainly:
The provider system exercises enormous influence over DDD.
Provider agencies are treated as indispensable even when people experience neglect, abuse, isolation, inadequate staffing, restricted choice, and lives that bear little resemblance to their person-centered plans.
At the same time, DDD has accepted the argument that making self-direction more functional, flexible, or attractive would somehow threaten the stability of the provider system.
The implication is that if people are offered a real alternative—if they can control their budgets, hire their own staff, choose where and how they live, and implement their own plans—provider agencies will no longer accept individuals with significant support needs.
We are then warned that the 9,659 people living in group homes could be abandoned.
This is not an acceptable justification for suppressing self-direction, nor for the continued abuse, neglect, exploitation and deaths at the hands of provider agencies.
It is a strategy for protecting a market.
It preserves profits, institutional control, and provider dominance by pitting one part of our community against another. It asks families of people in group homes to fear self-direction, and families using self-direction to accept restrictions so that providers will remain financially secure.
That is not person-centered policy.
It is market protection at the expense of human lives.
And those who continue to insist that providers are powerless within this system are helping to preserve the very structure that must change.
What will change a provider-centered system?
A person-centered system.
A genuine person-centered system does not abandon people in group homes. It does not privilege people using self-direction. It does not force families to compete for recognition, resources, or rights.
It requires DDD to fulfill its own obligations.
People write their plans.
DDD must sufficiently fund their implementation.
Providers must support the person’s plan rather than control it.
DDD must monitor whether person-centered plans produce meaningful outcomes and meaningful lives.
People must have real choice among support models.
Budgets must follow the person.
Rights must be enforceable.
And providers must be held accountable for the quality of the lives they are paid to support.
How do we know DDD itself is not being held accountable?
Name one Blueprint for Change group focused specifically on DDD’s own performance, repeated implementation failures, lack of transparency, and role in maintaining a profit-driven, provider-centered system.
There is not one.
Providers are discussed.
Families are discussed.
Support Coordinator issues are discussed.
Programs are discussed.
But the agency responsible for designing, funding, administering, monitoring, and correcting the system remains largely outside the frame.
That omission is not accidental.
I am deeply grateful for the personal stories we have received so far. They speak honestly about what it takes to build a meaningful life in a system filled with barriers, denials, delays, and hoops.
They describe people who persevered despite DDD—not because the system functioned as it should.
But these stories remain too few.
Thousands of people continue to struggle, whether they receive services through a provider agency, attend day habilitation, live in a group home, or use self-direction.
What about the stories that remain unwritten and unheard?
What about the families who are afraid of retaliation?
What about those who fear that speaking honestly will be dismissed as negativity?
What about those who have been taught that gratitude means never naming harm?
Gratitude and grievance can coexist.
You can value a staff member and still condemn the system that underpays and mismanages them.
You can appreciate a provider and still demand accountability.
You can be grateful for a service and still insist that it comply with the law.
You can recognize progress and still tell the truth about failure.
That is why the New Jersey Self-Direction Alliance created the Compliance Compass.
The assessment takes approximately 30 minutes. It gives you a structured way to document your experience, regardless of whether you use a provider agency, day habilitation, residential services, or self-direction.
You can describe what works.
You can document what does not.
You can identify whether your rights, choices, person-centered plan, community access, safety, and approved services exist in practice—not merely on paper.
And this is only the beginning.
The Fiscal Intermediary Compass is coming soon. Additional assessments will examine at a more indepth level, medical supports, behavioral supports, person-centered planning, community living, and other areas where the gap between policy and lived experience must be measured.
We are building an undeniable body of evidence.
Not anecdotes that can be dismissed one family at a time.
Not isolated grievances the system can explain away.
Data.
Patterns.
Outcomes.
A collective record of how the system actually operates.
This work will become as powerful as we make it.
By telling your story, you are doing more than documenting what happened to you. You are learning where power resides, what rights you possess, and how your experience connects to thousands of others.
You are helping build the evidence necessary to demand a person-centered system.
A system in which people lead.
A system in which plans are funded and implemented.
A system in which providers serve rather than control.
A system in which DDD is held accountable for the outcomes it is legally and morally responsible for producing.
Silence is also testimony.
It tells the system that the current conditions can continue.
It allows the provider-centered structure to remain unchecked, unrestrained, and enormously profitable.
Our silence will not protect us.
It will guarantee more of the same.
The time for choosing is now.
New Jersey can do better-if we demand it.
Yours in accountability and a better future,
Karen
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