The New Jersey Division of Developmental Disabilities (DDD) is now enforcing a restrictive 40-hour-per-week limit on Self-Directed Employees (SDEs). This means that even when a disabled adult needs more than 40 hours of care and already has one safe, trusted caregiver, DDD will not allow that person to work the additional hours, even if they live in the home and provide care 24/7.

Instead, DDD is telling families they must hire additional caregivers or agency staff to cover the remaining hours.

Not because the primary caregiver isn’t doing the work.

Not because the care isn’t being provided. But because DDD is enforcing an arbitrary cap that makes no sense for real-life families.

This is not a return to pre-COVID policy. This is not about program integrity. 

This is a forced-caregiver mandate that:

•Removes essential flexibility families have relied on for five years

•Punishes single parents and sole caregivers

•Ignores trauma histories and behavioral needs

•Forces vulnerable individuals to accept unfamiliar people in their homes

•Strips individuals of their right to self-direct their own approved budget

•Violates person-centered planning, ADA protections, and Olmstead principles

•Creates financial hardship by capping paid hours but not reducing the actual workload

For individuals who cannot tolerate multiple caregivers, this mandate is not just unreasonable.

It is dangerous.

-My Daughter Ashley’s Story-

Ashley endured severe trauma in 2015 when she was exposed to a predator in a DDD, approved adult day program. After that, her home became her only safe space.

Ashley is unable to:

•accept strangers in her home

•generalize to new caregivers

•communicate when she is scared

•handle rotating staff, new routines, or unfamiliar approaches

Because of her disability and trauma history, one trusted caregiver is not a preference, it is a necessity.

I am that caregiver.

I am her mother.

I am her full-time, trained SDE.

I live with her, support her, and keep her safe every hour of every day.

 

Yet now, DDD is telling me:

“You can only be paid for 40 hours, even though you must continue providing all the care. Hire strangers for the rest.”

This makes no sense.

Ashley cannot safely accept multiple caregivers. There ARE no other caregivers. And I am already doing the work DDD wants to divert to someone else.

This is Ashley’s state approved budget, and she’s losing the right to choose.

Under Self-Directed Services, disabled individuals and their guardians have the legal right to choose:

•Who provides care

•How many hours they need

•How their own budget is used

•Whether strangers come into their home

•Whether multiple caregivers are appropriate or unsafe

The new 40-hour mandate strips away that choice entirely.

DDD says we must hire someone else, even if the individual cannot tolerate that, even if it destabilizes them, even if it retraumatizes them, and even if the caregiver already in place is doing 100% of the work.

The message to disabled individuals is devastating:

“Your trauma history doesn’t matter. Your comfort doesn’t matter. Your safety doesn’t matter. Your autonomy doesn’t matter.”

This is not self-direction.

This is a forced model that destroys the very purpose of the program.

-Families Are Being Set Up to Fail-

DDD knows:

•Families cannot find additional SDEs

•Agencies are understaffed and unreliable

•Individuals with severe needs cannot tolerate rotating workers

•Single parents cannot hire, train, and coordinate multiple staff

•Many adults with disabilities regress or become unsafe with unfamiliar caregivers

The forced multi-caregiver model is impossible for thousands of households.

For sole caregivers, it is catastrophic.

DDD’s suggestion to “use natural supports” is equally unrealistic. Not all families have others who can help.

Not all relatives are trained, safe, appropriate, or available.

You cannot create “natural supports” out of thin air.

Financial Harm:

Capping Pay for Work That Still Must Be Done

The most harmful part of this mandate is simple:

I must still provide all the care, but I am only allowed to be paid for 40 hours of it.

This means:

•I work beyond 40 hours anyway

•I do the full workload regardless

•I risk losing my home

•I cannot leave to work another job

•My daughter is left unsafe if I am forced to do unpaid labor

DDD is requiring me to continue full-time caregiving while denying me full-time pay.

This is not sustainable. This is not ethical, and it directly endangers my daughter.

 We Call on Governor Murphy, DDD Leadership, and New Jersey Legislators to:

1. End or revise the 40-hour SDE limit immediately. Especially for live-in caregivers and sole providers.

2. Create clear exceptions for:

•trauma histories

•behavioral and communication barriers

•individuals who cannot tolerate multiple caregivers

•single-parent households

•sole caregivers and live-in caregivers

3. Protect the right to true self-direction:

Allow individuals to choose WHO they want, HOW MANY hours they need, and how THEIR state-approved budget is used.

4. Establish a medical-necessity & hardship exemption process

So families do not lose stability, income, or housing.

5. Ensure families are not forced to bring strangers into their homes

Especially when this violates safety, trauma history, and person-centered care.

 

**This Petition Is Not About Avoiding Hiring Someone Else.

It Is About Safety, Choice, Trauma, and Human Dignity.**

Disabled New Jerseyans deserve stability. They deserve the right to choose who touches their body and enters their home. They deserve consistency, protection, and respect.

Families who are doing everything right should NOT be punished. A policy meant to “spread hours” should NOT destroy the only safe support system an individual has.

Please sign this petition to protect the safety, rights, and autonomy of disabled individuals and the families who care for them with love, dedication, and sacrifice every single day.

Together, we can demand a DDD system that recognizes real lives, not just policy paperwork.