Our Story

My brother and sister, J&J, are the reason this site exists. So I want to start by telling you how we got here.

A place we trusted

For a long time, J&J lived in a group residential program. My brother had been with that provider since he was about 10 years old. My sister joined him there after our mom passed away. At the time, it was the only place my mom trusted, and I trusted it too. Until I didn't.

The surprise visit

Before COVID, my wife and I picked them up often, usually at least once a month, at the provider's main office. Then, during COVID, there was a stretch of months when I couldn't get up to see them.

In October 2022, I made an unannounced visit to J&J's apartments in their residential program. They each had their own apartment with a roommate, and both were equally bad. I had come to take them out to lunch.

I found mold, cockroaches, and bedbugs. The carpet had a patch of dark black fungus more than two feet across, from the top of the steps into the living room and bedroom. The tiles in the kitchen and bathrooms were covered in mold. Food had been bagged up and put in the refrigerator, which told me the problem was known, and railings were coming off the walls. And my sister was going through breast cancer treatment at the time, living in that. I traveled up for as many of her chemotherapy treatments as I could, and that was a lot of them. But in between, I had to trust the staff. I didn't realize I was trusting the wrong people.

I took photos, took J&J home that day, and filed a complaint with the NJ Division of Developmental Disabilities on October 30, 2022. Nothing came of it. That's where our journey as full-time caregivers began.

J&J were happy to come home. But their lives were turned upside down too.

When it happened again

After that, J&J went to a day program so my wife and I could work.

In August 2024, I noticed changes in my brother's and sister's behavior. I finally got my brother to tell me what happened, and then my sister confirmed it. They told me staff at the day program had put my sister in the back of a hatchback, basically the trunk of a car, and driven her around all day. Nobody from the program ever told me. When I confronted them, they said she had said it was OK. My sister trusts everyone and will do whatever she's told. Her care plan has said from day one that she's very trusting and has to be supervised. Staff knew that. 'She said it was OK' isn't consent, and protecting her was their job. New Jersey law requires every passenger to wear a seatbelt, and there are no seatbelts in the back of a hatchback. In my opinion, what they did was immoral and extremely poor judgment. I asked in writing for a copy of the report filed with the state's Institutional Abuse Investigation Unit. I never received it. J&J never went back.

My brother was visibly very upset, and my sister shut down. It took her a while to work through it.

I'm a retired police officer. My second career was as a security supervisor at a school for students with special needs, so I saw firsthand how differently people are treated once they turn 21. My wife taught cosmetology, skin and hair, for many years.

After what happened at the day program, J&J couldn't be left alone. We both left our professional jobs to take care of them. We didn't really have a choice.

The way I see it, the state kind of forced us into this situation. And I'll be honest: I don't trust state facilities anymore. That's my experience. I've met some great people in this field, and they make a real difference. The problem is the people who aren't good.

What every day looks like

Now I'm responsible for everything. Doctor's appointments. Feedings. Medications. Making sure they get their showers on time.

J&J can do a lot on their own. But it takes a lot of prompting and a lot of supervision, every day.

Traveling with J&J has limits, so an RV was really our only choice. We had never tried RVing and never thought we wanted to. But we jumped in, invested, and we love it. Talk about memories.

What it costs

Caregiving is 24 hours a day, seven days a week, 365 days a year. No days off, no sick days, no personal time. That's probably the biggest thing people don't realize. It takes 100% of your time, and you lose touch with the world, especially when you're caring for adults who are no longer in school programs. That's where the big difference comes in. I'm not complaining. I'd do it a million times over. It's my family, and it's what I do. But it has come at a cost.

There are costs people don't see. We were promised insurance, and then I lost my own. We pay for my wife's insurance, but I still go without. I guess that's all part of being a caregiver.

My wife and I work very hard at this. It's been extremely difficult.

Why I'd do it again

But I wouldn't change it for the world. I would do it again for my brother and sister. I would do it a million times over.

That doesn't mean it's easy. Both things are true at the same time.

Why this site exists

I started this site because of J&J, and because of families like ours.

Here, I'll share our story, our everyday life, and what we've learned along the way, honestly. If something here helps your family feel a little less alone, or a little more prepared, then it's worth it.

Everything on this page is my family's experience. It was a pretty bad one. But it's still just my experience, and yours may be very different.

What you'll find here: our real experience caring for J&J, the good days and the hard ones. We'll write about caregiver burnout and respite, daily care routines, guardianship, working with DDD and support coordinators, choosing day programs and providers, and the real costs of caregiving, including paying out of pocket for dental and vision because the state insurance doesn't cover enough. You'll also see what it's like to travel with J&J in our RV. As paid caregivers through DDD, we'll share what we've learned about the rules for traveling out of state, with links to the official sources so you can check them for your own plan. This isn't legal or medical advice. It's one family sharing what we've learned, so you don't have to figure it all out alone.

Thank you for being here.

- Albert Clements