Impossible Choice

This might not be my greatest piece of writing. Forgive me. It’s nearly the end of the month, and it’s my turn to write the blog post.

We are in crisis.

What does that mean?

It’s something I often hear people say and see posted in Autism groups. I don’t know how else to describe our life these days. I guess it’s when you reach the point that you know that the way things are is utterly unsustainable. We all have days when we think we can’t do this anymore, but then we wake up, it’s a new day, and we keep going.

Crisis feels like knowing that we cannot continue this way.

We went from “wow, can adult life really be working out this well?” to “I cannot keep this up; This is unhealthy for everyone,” in a matter of months.

In September of last year, my son was kicked out (“suspended”) from his day program. A program that, for the better part of the year after he graduated from high school, had been working quite well for him. So much so that I told everyone I knew about it. But something changed in July and August. What started as a small program grew to a much larger day program with different staffing ratios and many more participants. It doesn’t matter what happened; it wasn’t working for my son, and instead of providing him with the support he needed to be successful, he was expected to “go with the flow”. By the time he had the major aggressive behavior that got him kicked out, it was too late. There had been too many weeks of improper reinforcement, a lack of insight about what the function of the behavior was, and little to no attempts to really communicate with me before the escalation.

There was talk of bringing him back if he could “get it under control”, but we all knew there was never any real intention of doing that. They were becoming yet another day program that doesn’t accept individuals with challenging behavior. There is nothing but those kinds of programs in my county, and the ones that do have waiting lists a mile long. There are several innovative programs; farms, cafes, fitness-oriented, etc., but none of them accept adults with challenging behavior. Even if that behavior is not something that happens all the time. If you have a Behavior Plan, you are not eligible.

After they “suspended” my son, they sent a staff member (Direct Support Professional/DSP) to work with him. Great. She took him out in the community a few times locally, and he did fine. I had asked the agency to provide a behavior plan and requested supervision, specifically a Board-Certified Behavior Analyst, to help prepare the DSP. They told me that it was not available because they don’t bill DDD for Behavioral Supervision.

(Each individual receives a budget from the state when they qualify for disability in NJ. Each “Tier” is based on the individual’s level of required assistance, and each has a different annual budget. That budget is divided into sections with different dollar amounts. One section is for Day Program, another for Goods and Services, and another for Community Inclusion. Everything is billed down to the minute, and there are a lot of budgeting gymnastics that take place in order to make things work for the individual. But each agency can differ on how they perform those budgeting gymnastics in order to stay compliant with the endless pages of rules and regulations they must adhere to. It’s a nightmare.)

More and more, agencies are choosing to make it easy for themselves and simply NOT OFFER SERVICES to individuals who need behavioral supports. One of the ways they do this is by not offering them as DDD items, but items that can only be paid for through private insurance. This is why we were told we couldn’t receive this support. BCBA’s for example. One agency will bill the service to the budget in a creative way, the other says, ‘No, can’t use the budget for that. If you have the means, you can pay out of pocket.

The next time my son went out with the DSP, she misread him, and a major behavior ensued. Screaming, grabbing, pushing, hitting.

The DSP didn’t know how to handle it. He was aggressive and unsafe, and the police were called. He was ultimately transported to the hospital in restraints. And that was the end of support from that agency. That was early October of 2024.

It's now July 2025. We have not been able to find an appropriate day program. We have struggled to find Direct Support Professionals to work with my son. For months, there was just literally no one responding to our requests. When we did try someone out, they would last for one session. You must understand that the only qualification to be hired as a DSP is to have a valid NJ Driver’s License and not be a criminal. Agencies then offer training, but they only pay $17-20 per hour. Who wants to get hit, screamed at, sometimes bit for that kind of money? Let’s just say, it’s hard to find people who have the skills we need.

We decided to pay out of pocket for a full Functional Behavioral Assessment with an agency that proposed to evaluate what the underlying cause of the behavior(s) is/are, and create a behavior plan that anyone could implement, and that they would train to implement if need be. We signed on in December. That process didn’t begin until nearly April. It is still incomplete.

Meanwhile, we had months of daily screaming, self-injurious behavior that we NEVER had before, loss of language, and extreme anxiety to the point that we could not leave the house. Non-stop, all-day behavior “management”, if you can even call it that. Survival is what we call it. We were watching him regress before our eyes. Watching as anxiety and fear of getting in trouble, or losing things because of behavior, escalated to the point of being debilitating. One day, he’s with his friends, going out, having fun, having a life. Next, he’s being ignored, expected to tolerate 20 people in a room talking over him, and then sent home never to return. No outings. No friends. No purpose. And no idea when those things might return.

At one point, my son started to scream in bed as he was going to sleep. He would get close to sleep and start to scream, hitting his head. That had never, ever happened before. Until then, I would put him to bed, he’d watch his iPad for a while, and I wouldn’t see him until the morning. Suddenly, I needed to stay with him until the Xanax kicked in and he could fall asleep. The neurologist thought he might be experiencing PTSD from the ambulance episode and be having flashbacks. We added meds. Things were unraveling before our eyes, and we had NO SUPPORT. Take him to the ER, they said. Get him admitted, they said. They’ll eventually take him into Trinitas Hospital for Behavioral Health (the only hospital in the state with a dedicated unit for individuals with Intellectual Disabilities and Autism), where they will keep him until he is stable. This did not seem humane. We came close, but we never ended up doing it.

We did spend time in the ER, however. After the nighttime screaming, my son began waking at 5:00 am, coming into my room and hitting me before I had even opened my eyes. We ended up at urgent care because I suddenly noticed he had blood in his ear. He had an ear infection that he never indicated was bothering him. Over the years, we had worked very hard to help him communicate how he felt physically. Hungry. Ear hurts. Head hurts. Belly ache. Gone. Who knows how long he’d been in pain? The regression in his communication was now interfering with his health.

Urgent care didn’t prescribe a long enough course of antibiotics, so in a week, we were back at the doctor with the other ear infected. Another 10 days of antibiotics. After that, severe diarrhea. Bloody. Abdominal pain. Crying, hitting me. Not eating. Tested for C Diff. Back to the ER. CT scan. Nothing to explain the symptoms, but oh, guess what? He has a kidney stone. Follow up with a urologist.

The gastrointestinal symptoms continued. Consulted with a gastroenterologist. Colonoscopy. No answers. Endoscopy, no answers. Lots and lots of Dr. Google. Down one particular rabbit hole, I read that Metformin, which he takes to counter the weight gain of his other meds, could cause these symptoms, but he’s been on this for years. I mentioned it to the gastro. “Oh, good thinking. Yes, that could be causing those symptoms. Stop giving it to him for a week or two and see how he does.” Thanks very much. Can I please be paid your full fee?

While all this was going on, we realized that we had reached our mental health capacity to support our son at home and made the impossible choice to ask for emergency placement. This means asking DDD to determine that he is in imminent danger of being homeless or that we are unsafe. This is a fun way to think about your child if you’ve never had the pleasure.

First, your Support Coordinator has to submit an Intensive Case Management request. Forms, documentation, a parental letter to describe what is going on in detail, and what kind of danger you’re in. And don’t get me wrong, one wrong push in the bathroom and there have been many times I’ve pictured my head slamming into the tiles or the corner of the counter. Or tumbling backwards down the stairs. Sometimes, if we forget to remove the knobs from the stove and turn off the valve that we installed to shut the gas, he’ll start the stove and make a “campfire” out of the wooden spoons.

One day, he didn’t even push me. I was just trying to extricate myself from his constant pawing at me, and I lost my balance and stepped backwards on a set of doors that were lying flat on the dining room floor, waiting for an opportunity to be installed. I didn’t even realize I was cut, but I ended up needing 11 stitches on the bottom of my foot.

After the ICM request, DDD comes out to interview you, and you need to prove that your adult meets the “level of care” necessary for Intensive Case Management. If they agree, this will give you early, emergency access to the Community Care Plan (CCP). This is a much larger budget that can support residential placement or full-time, in-home support. This is the waiting list that is 10 years long. Unless there are dire circumstances upon high school graduation, most everyone is placed in the Supports Program that I mentioned above. The only way to get CCP support earlier is if a parent dies, is terminally ill or incapacitated, or you or your child is in imminent danger. Naturally, my son was as docile as a lamb the day they were here. But they could tell by the way we flinched every time he came in the room, and by our hypervigilance and frazzled demeanor that we were sincere.

We easily met the criteria. And make no mistake, it’s not like there’s a placement immediately available for your adult child because they are so dangerous. And the ones that might be available are not appropriate…people out of rehab or purely severe mental health issues. Where you go and who you’re placed with matters.

You have to wait for referrals, for an opening somewhere. All while hoping it’s not in any of the places that have recently been reported to be neglecting and abusing disabled adults. In some cases, individuals have died. These are horror stories.

In the meantime, we have access to a much larger budget, so we can pay providers for the support my son needs. That is, if we can find them. DSPs to take him out in the community. DSPs who can take him to classes in which he otherwise wouldn’t be able to participate. In the Supports Program, you don’t have the resources to pay for both the DSP (remember, these programs don’t bill for behavioral support) and the activity they might like to attend. So, while there might be a music class that your adult likes, unless you can provide someone to go with them, they aren’t going to be able to go. And that kind of support eats up the budget very quickly. With access to the CCP, we might have the resources to eventually cobble together a schedule that he might actually enjoy and that might give him some semblance of self-respect. Lying around at home with your 60-year-old parents when you’re in your early 20s is not what anyone wants. Intellectual/Developmental Disabilities don’t spare us that developmental milestone.

On the one hand, my son indeed wants more independence from me, on the other hand, whenever I leave the house, my son spends every single minute asking where I am, screaming, and hitting his head. For whatever reason, Dad isn’t cutting it for him, and when I have to go to work, or take my daughter somewhere (oh, yes, I have a 17-year-old daughter with anxiety, panic attacks and PTSD, not to mention her own health issues of late) it’s non-stop torture for dad; Nothing he can say or do makes it stop except Xanax.

This has been life for months now. We don’t leave the house unless it’s necessary or to take our son for one of the many, many VERY FAMILIAR drives he will tolerate. He won’t get out of the car and engage with any of the places that he used to love, but he’s content to drive. We stay home and deal with endless trips to the bathroom, belly pain, cleaning the bathroom, doing laundry, and for me, lying on the couch where my son lives, glued to me from morning till night. My 24-year-old, adult man-boy, who is pressed into my side and follows me everywhere I go. If I get up to go to the kitchen, if I go to get dressed, god-forbid I need to use the bathroom or take a shower. He literally stands outside banging on the door until I come out. I do everything at lightning speed and with full anxiety.

There are glimmers of the boy I know. Occasionally, he seems to be pain or anxiety-free and laughing or smiling about something. He wants things to do, to look forward to. (Sadly, today I took him back to the doctor for yet another ear infection, and he was happy to be somewhere where he knew what to expect.) He wants purpose and routine. He wants to be with peers, not just adult caretakers. I know he wants interaction with the opposite sex, but he doesn’t understand and can’t handle it. There is literally NO ONE to help with THAT! Even the professionals won’t touch that one with a ten-foot pole. Too much liability.

So here we are. We ultimately got access to CCP. This is excellent news. We have already gotten a referral for a placement. This is terrifying. And confusing. HL21 is supposed to be for Jackson, but it’s not ready yet. He needs support now. What if we place him because we have to, and he finally acclimates and is relatively happy? What do I do? Move him when we are ready? Would that be fair to him, even if the placement isn’t ideal in my eyes? How will he react to being “sent away”, and also what kind of life is this for him here? This is an impossible choice.

I don't make New Year’s Resolutions, but I do select a Word of the Year. This year’s word (selected back in January) is CHOICE.

Ironic, in that I feel like I’ve had absolutely NO choice in any of this.

I picked this word because I needed to let go of what happened with the day program in the past and deal with what was in front of me. I felt I needed to make choices based on where we were at the time, and choose what to do moving forward.

Instead, I’ve felt like a victim of circumstance and Jackson’s behavior, not like I’ve made any deliberate, intentional choice about anything. And now, I’m in a situation where the choices all seem less than ideal. Impossible.

This is the reality of Adult Services in NJ. I know it could be much worse, and it is for many families. Families who won’t or can’t choose a residential placement. Families that don’t know what their options are. Families that are spending every waking moment just trying to stay alive. With holes in the walls and holes in their hearts. Blackened eyes, missing teeth, fecal smearing, and resignation. This is not ok. This is not humane. This is a crisis of epic proportions that is not isolated to New Jersey but exists across the country. Indeed, it’s much, much worse in some states because, as difficult as the system is here, we’ve had some decent advocacy, and our statewide implementation is better than many places. Some states have absolutely nothing.

There needs to be a massive change in how services are structured, how the CCP Waiting List is organized, and how rules about services are implemented. Changes need to be made so that services can actually be delivered when and how they are needed, not according to some one-size-fits-all handbook of rules. And for heaven’s sake, we’ve spent enormous resources over many years to improve services from the age of 3-21 (they are SO much better now than when my son started school at age 3). What a waste that we just let them fall off the cliff once they leave the mandated support of the education system at 21.

I hope we make the “right” choice for Jackson. I hope we have a choice that doesn’t feel like an impossible one, but one that we can have some degree of confidence in and feel good about making. Our disability system gives a lot of lip service to “dignity and choice” for adults, but in many, many cases of severe behavioral, mental health, or medical challenges, there is little dignity in the choices offered.

As I write this, our federal legislators have chosen to pass the largest cuts to Medicaid (the system that funds healthcare and services for people with disabilities across the country) in history. Funding for private organizations like HomeLife 21 will be even more crucial than it is now. There will be even less choice, and dignity will be reserved for the wealthy. There will be no way to fill the gap left from a lack of federal funding, but we will never stop fighting. I will not perish from this earth without dignity for my child.

If you would like to help, please consider donating to HomeLife 21 today.