All states have different regulations regarding the services provided to individuals with developmental disabilities. There are differences not only between states but there are also differences within the counties of each state. I have spoken with online friends from other states that can get absolutely nothing in regards to support for their children while others are on waiting lists that span for years. Most states end educational/school based services for children at the age of 18 or 21. We are lucky to live in a state that provides educational services from birth to age 26 (at least for now).
When 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 were finally able to get services through a waiver program that was 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 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 had decided to be “Employer of Record” meaning we would be the ones interviewing and hiring the individuals that 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. In efforts to find others to help use the hours we were given (or be at risk for losing them) we had to find additional help. In our search we found a few other great gals that have helped us on and off through the years, we found some mediocre helpers that were OK but nothing to write home about, and thankfully only two that we had to let go because of irreconcilable differences. When I say irreconcilable differences what I really mean is that I could not reconcile myself to let them continue to work with Zach because they sucked!
We enjoyed the children’s waiver services for several years then when he approached his 18th birthday we were told that the day he turned 18 his services would diminish to less than half of what he had 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 always envisioned what the “ideal” living situation would be for him. It would be a home that we purchased nearby in the community, the home 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, have a nice fenced in backyard, he would have his own room and he would live in the home with roommates that 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 had started their own homes and knew that is what I wanted for our son.
Fast forward to 2015: Massive budget cuts have hit our agency and pay rates that we are allowed to pay caregivers have steadily decreased and housing budgets have been gravely affected as well. As of now the agency is not staffing any new personal residences. We are only allowed to look at existing residences and licensed homes. Murphy’s Law strikes again…if only we had 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 that we could see what our options were. We were also told we would attend “meet and greets” I liken these to a Matchdotcom 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 did not necessarily have a particular destination in mind, that 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’s top pics but the same Barney, Blue’s Clues and Arthur videos that have been watched for the last 17 years. I could with good conscience mention his music interests…Up to date pop music lover and You Tube connoisseur.
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 thirty minutes from home and he would not be able to attend his same school and if we liked it we would 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 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 did not 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 that 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 had been told that the local district would provide his school based services but found out quickly that that indeed that would not be the case…..we would be moving him 30 minutes away only to be bussed back to a center program in our area approx. 4o minutes away. The visit was no longer than 20 minutes then we were on our way.
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 twenty 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 that the spot was no longer available. Back to square one! Admittedly I was a bit relieved, I really wanted something closer to home and ideally where he could attend his school.
Little did we know that that home was top notch compared to what we would be referred to next…..
Next: Swallowing the Bitter Pill Part 3: It’s all about the Quality!