The First Group Home We Looked at for Our Son

All states have different regulations regarding the services provided to individuals with developmental disabilities. There are also differences within the counties of each state. I’ve spoken with online friends from other states where they get absolutely nothing in regards to support for their children. Others have been on waiting lists for years. We’re lucky to live in a state that provides educational services from birth to age 26.

When my son, Zach, was young, we were unable to get any type of services because of our household income. We struggled for many years with no support and paid handsomely for sitters when we could get them. After a several-year battle, we finally got services through a waiver program based on Zach’s significant needs rather than our income. Those services were life-changing. We were able to enjoy a quality of life with our daughter, Emily, and attend her events. It also afforded us time as a couple, which in turn preserved our marriage.

It wasn’t always easy — we’d decided to be “Employer of Record,” meaning we’d be the ones interviewing and hiring the individuals who would be in our home and work with Zach. Beth has been our Godsend, our angel and our rock but she couldn’t/can’t do it all. To find others to help use the hours we were given (or be at risk for losing them), we had to find additional help. We found a few other great gals who have helped us on and off through the years. We found some mediocre helpers who were OK but nothing to write home about, and thankfully only two we had to let go because of irreconcilable differences.

We enjoyed the children’s waiver services for several years. Then when Zach approached his 18th birthday, we were told his services would diminish to less than half of what he’d been receiving. It made no sense — he was older, we were older, and although some things were easier, others were much more difficult.

Once we wrapped our heads around the idea that Zach could never live independently, I envisioned what the “ideal” living situation would be for him. It would be a home we purchased nearby in the community. It would have all the amenities we considered important. It would be off the beaten path, not near busy roads, not near a pond or lake. It would have a nice fenced-in backyard. He would have his own room, and he would live in the home with roommates we helped choose. The agency we work with would staff the home 24/7, and we would play an active role in all of it. I met with other families who’d started their own homes and knew it was what I wanted for our son.

Fast forward to 2015:  Massive budget cuts have hit our agency, pay rates for caregivers have steadily decreased and housing budgets have been gravely affected. As of now, our agency is not staffing any new personal residences. We’re only allowed to look at existing residences and licensed homes. Murphy’s Law strikes again…If only we’d been in the market to start a personal residence even a year ago, we could have done so. My dream of starting a home of our own for Zach was not in the cards.

We agreed to put Zach on the referral list. Being on this list would allow us to visit personal residences and licensed homes (with no commitment) so we could see what our options were. We were also told we would attend “meet and greets.” I liken these to a Match.com for individuals with special needs. Parents and guardians gather together to see if they can find a “match” for their son or daughter. I laughed to myself thinking about what we would include in Zach’s profile: Hi, My name is Zachary. I am a 20-year-old man looking for someone to room with. I enjoy travel, being a foodie, movies and music.

It would soon become apparent that “travel” meant endless car rides that didn’t necessarily have a particular destination in mind. Being a “foodie” involved PICA behaviors, stealing others’ food and raiding the pantry and fridge at every opportunity. It would also become apparent that the movies were not Oscar-nominated flicks but the same “Barney,” “Blue’s Clues” and “Arthur” videos that have been watched for the last 17 years.

Our first referral came in December — a licensed home with three residents, a well-respected agency providing the care, and he would have his own bedroom. The downfalls were that it was a good 30 minutes from home, and he would not be able to attend his same school. If we liked it, we’d need to move him out at the beginning of the New Year.

We agreed to go see it because we needed a reference point as to what was available to us. The visit was scheduled for December 23, two days before Christmas. As my husband, Mike, and I took the trek out to the home, I could feel my anxiety rising and my stress level building. I kept telling myself  “It’s just to look, no commitment.” I didn’t want to break down in tears in front of the home manager or residents. I had to get through this visit, then I could “lose it” on the way home.

The home was off the beaten path in a rural setting. We were concerned with the lack of activities available in the area and the amount of time it would take to get to those activities, but we headed up to the door. We were greeted by a young adult with Down syndrome and the home manager. The other resident – a man who sounded similar to Zach but in his 50’s, was at a day program. We were given a tour of the home. It was a lovely open ranch with a nice yard and his own room. Several of our must-haves were there. We’d been told the local district would provide his school-based services but found out quickly that indeed would not be the case. We’d be moving him 30 minutes away only to be bused back to a center program in our area approximately 4o minutes away. The visit was no longer than 20 minutes.

Of course, as predicted, as soon as we pulled out of the driveway, the tears started flowing. Mike and I liked the home, but there were definite hesitations and concerns with some of the logistics. We had questions but decided to enjoy our holidays and then discuss if we wanted additional visits and information on the home. We couldn’t possibly base our son’s living arrangements and life on one 20-minute visit.

After the holidays, we were ready to investigate a bit more only to find out that an emergency placement had taken precedent and the spot was no longer available. Back to square one! Admittedly I was a bit relieved; I wanted something closer to home and ideally where he could attend his school.

Little did we know, that home was top-notch compared to what we would be referred to next…

This post originally appeared on Monkey Business. Read Part I to this journey here.

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