The stories of families across the state facing crisis because they're shouldering the care of their loved ones with disabilities are countless.

A mom sleeping next to her son on the couch every night for eight years, afraid to miss his medical alarm.

Another mother caring for triplet sons who all have cerebral palsy with limited help from a home health aide.

Health care writer Lilo Stainton took a close look at what's happening in the state and what changes are needed in the health care system to help these families.

She joins me now to explain what she's learned.

Lilo, can you describe the reality that so many families of those with disabilities are facing here in New Jersey?

Yeah, I mean, the parents I talked to as primarily mothers, I mean, describe this sort of interminable wait for something to happen to get something new that you need so it may be appropriate housing, it may be more nursing help.

But in the meantime, there's sort of all these daily crises that you deal with.

We're talking about children or young adults who have feeding tubes, who require ventilators to breathe.

I mean, to you know, medical equipment, anything could go wrong.

You could not have enough suction.

One day, the child could get congested.

Next thing you know, you're back in the hospital.

And this triggers this whole new process that parents describe as sort of this chaos where you're constantly trying to find the ground under your feet, waiting for something to stabilize when almost nothing does.

Paul Aronsohn is the state ombudsman assigned to help these families navigate the system.

He says these families are simply in crisis.

What is needed?

What are the solutions that are needed here?

Right.

And I think it's important, you know, and when Paul was saying that we talked for a while, I mean, his point was, is this the families that he sees are the ones in crisis.

There are families for which the system is working.

Right.

There are more than 25,000 adults with disabilities, some severe, some not so severe that are, you know, have services through the state.

So for a lot of them, it may be working for the cases that that I talked to.

I mean, we're talking not just disabilities, but also these complex medical issues.

And for them, it comes down to largely a lack of housing opportunities.

Even that comes down to largely a lack of nursing and, you know, we hear so much about nursing shortage.

We see people striking talking about the need for better care ratios.

This is the same situation in the world of folks who have disabilities and complex medical issues.

You know, they need nurses to help move someone to to feed them to clean them, to help them go to the bathroom, everything to get dressed, to get undressed.

Everything requires often two hands and or two sets of hands and they're just not enough people.

What are the barriers Lilo to expanding the care, whether it be nursing or more group homes, as you say.

Does it all come down to funding with just a little bit of time?

Yeah, it is.

A lot of it is funding.

The state has put a significant amount of money toward this.

But, you know, I talked to one Kevin Martone, who's a former executive with the state, but he, you know, a housing expert.

And he talked about just, you know, the incentives to build this kind of care aren't really built into the system.

Right.

You know, there's a lot of NIMBYism and people don't like the idea of three or four or five, just people with severe disabilities necessarily living in their community.

There are you know, there's funding challenges, there's staffing challenges.

A lot of it comes back to staffing.

And how do you create an economy of scale when you know you want tailored care that is precise to the individual?

Yeah, it's a challenge.

It certainly is a challenge.

Lilo Stainton.

Thank you, as always, for your reporting.

Thank you, Joanna.

Support for the medical report is provided by Horizon Blue Cross Blue Shield of New Jersey.

An independent licensee of the Blue Cross and Blue Shield Association