Bonnie Clayton Daugherty and her husband Mike opened their home to Doug McLain. Their story shares the challenges involved in creating the optimal adult living situation, and how listening to your heart and thinking outside the box can have excellent results for everyone.
For many years, I led a community-integrated programme to help adults with a wide range of special needs learn travel, job, cooking, library and banking skills. One of the most important aspects of this training was creating behaviour modification programmes to help adults in our programme interact successfully with the wider community,, using positive reinforcement techniques to help our clients gain employment skills so they could begin to earn a pay-check. Twenty-seven year old Doug had been assigned to my group because he had some challenging behaviours. Doug often struggled with following directions and adhering to workplace rules. He might show up to a job site wearing several layers of unnecessary clothing, his pockets filled to overflowing with items he didn’t need — often as much as twelve pounds of extra weight! Doug also had a compulsion to “sneak” and hoard items that didn’t belong to him. This behaviour could pose all kinds of problems in a work environment.
Overcoming these traits would help Doug integrate within the community groups he longed to be a part of, and my job was to help him get there, said Bonnie.
For our first assignment, Doug and I were scheduled to work at a small shop located within Superior Court in Santa Maria, California, US, selling snacks and drinks to prospective jurors. Given Doug’s behavioural challenges, I knew it would be important for us to establish a positive working relationship from the start. I felt confident that with the right programme, Doug would be successful. Our first day at the shop went smoothly, and I knew that Doug’s quick mind and joy in serving customers would serve him well.
Support from Doug’s Family.
After our first day of work together, Doug’s parents invited me to their home for coffee. Ramon McLain was the first parent ever to ask me what I could do to help his son. It was obvious to me that Ramon and his wife Nellie were dedicated to improving Doug’s life in every way and would use every available resource to make that happen. After just a few minutes together, I knew that Doug’s family and mine would have a special bond.
We all agreed that Doug would benefit from participation in additional activities, so I began inviting Doug to some of the community events that my husband Mike and I attended. Soon Doug was spending time at our home for dinners and game nights. After he had joined us on a few day trips, it occurred to me that Doug might enjoy staying overnight in our home. This would broaden Doug’s experiences beyond life in his own family home, and offer his ageing parents some desperately needed respite. The McLains happily agreed.
Mike and I were delighted at how happy that first visit made Doug! We enjoyed Doug’s quirky personality. Doug had a habit of changing his clothes several times a day, and Mike and I would find ourselves giggling every time he appeared from his bedroom in a new outfit. He insisted that Mike and I go to sleep at the same time he did, or he would stay awake with us until we turned in. Doug accompanied us at church, and we were delighted to see him display beautiful manners, shaking hands with everyone he would meet and even hugging acquaintances he’d met in the community. Before meals, Doug always said his special prayer:
Dear Father, my food is good in my stomach. Thank you for membership (meaning friends from church), Bonnie, and Amen!
In time, Doug’s overnight stays become more frequent, and Mike and I really looked forward to them. He brought such joy into our home!
Finding a Home Placement for Doug.
Sadly, after some time with this arrangement, Doug’s mother Nellie passed away. Ramon did his best to continue to care for Doug on his own, with occasional help from Doug’s brothers Bruce and Rick, but as Ramon grew older, it became more difficult for him to provide the level of physical care that Doug required. By now, I was quite familiar with Doug’s abilities and challenges, and I was honoured to be invited to attend a family meeting to discuss Doug’s future living situation.
Ramon felt strongly that Doug would not do well in a group home situation, with other adults with disabilities, as he’d always lived in his family home. Doug’s brother Rick lived in Brazil with his family, which would be too great a challenge for Doug to negotiate. Although Doug’s brother Bruce lived close by, his position as a minister servicing many churches required frequent travel, making it difficult to provide a consistent schedule for Doug.
As I sat with the family pondering these challenges, I suddenly realised where Doug could live and thrive.
Mr McLain, Mike and I would love to have Doug come and share our home. Would you consider that option?”, Bonnie asked.
Ramon burst into happy tears, as did I! This seemed like such a perfect solution, one that we all knew would benefit Doug.
Becoming a Licensed Home Care Provider.
Legally, in the US, only family members of a person with a disability or a licensed certified group home provider are acceptable placements for adults with disabilities. Since Mike and I were not family members, we agreed to begin training to become licensed certified home providers. Having worked with agencies for many years as an instructor, I knew Mike and I would prove to be wonderful providers, and we were happy to sign a legal agreement with a local agency who would help us work towards officially welcoming Doug into our home.
Things started off great! Doug looked forward to agency staff visits, and Mike and I attended regular meetings as required. I learned how to keep detailed daily notes, financial and medical records, and logs of each community outing; far more paperwork than had been required as an instructor! I also carefully followed and documented Doug’s behaviour plan and monitored several weekly goals. Every decision about Doug’s care required a doctor’s visit for a signature of approval. It was a lot to juggle, but Mike and I were committed to making it work so that Doug could officially live with us.
All was going well until the agency area manager, with whom we had worked closely, retired. The new manager did not have the same level of expertise or professionalism. I’d always spoken honestly with the area manager, whenever I had questions or when issues arose. I never imagined that these conversations could be used against me, until I was referred to as “difficult” to our newly assigned support staff. The agency frequently reminded Mike and me of our confidentiality agreement, which prohibited discussing any concerns with Doug’s family. I felt we were being asked to keep secrets from Doug’s family, and became increasingly uncomfortable with the “support” provided by the agency.
The State Department of Developmental Services had scheduled an audit as part of the licensing certification requirements. Despite having diligently kept the books and records, overseen by the agency manager, there was one medication error identified, which hadn’t been picked up by agency staff.
As a result Mike and I were “sanctioned” and in danger of not receiving our certification.
Our home soon became an endless stream of visitors, supervision, more records and more paperwork. It no longer felt like the warm, family-oriented environment that we wanted to provide for Doug. Even more upsetting was that confidentiality agreement with the agency, which prevented us from working hand-in-hand with Doug’s family, the way we had envisioned. Rather than supporting us, it felt that the agency seemed intent on shattering our dream.
A Make-or-Break Decision.
Mike and I knew we had to involve Doug’s family in whatever the next steps would be. For our part, we were ready to walk away from the agency, but to do so we would need the McLain’s input. Thankfully Ramon, Rick, and Bruce all supported Doug continuing to live with us. That gave us the confidence to make our decision to leave the agency.
Meanwhile, the agency was hard at work finding a “better” placement for Doug. They told us to take a vacation to work things out, and organised another placement Doug, far away from Santa Maria, refusing our offer to have a staff member stay with Doug in our home. That “better” placement fell through, and the agency didn’t include us in finding another solution; instead they contacted Doug’s brother Bruce and asked him to keep Doug for a week, which Bruce agreed to do. Mike and I went to visit a trusted friend in Florida, Linda Tuttle, whose adult daughter Jamie has Down syndrome. She understood our anguish as we sorted through the options in finding the best placement for Doug.
As the end of our holiday approached, Mike and I were more convinced than ever that the best option for Doug was to continue living with us. We scheduled a meeting with Doug, Bruce and his wife Margie to discuss the situation frankly, and we were relieved that the family agreed that Mike and I should fight to keep Doug in our home, where he was happiest. The next step was a team meeting with the home licensing agency, Doug’s vocational training centre, and his family. Doug was asked if he wanted to move. “I did that already”, he replied, and told everyone that he wanted to stay with Mike and me.
The Best Place of All.
Janet, Doug’s service coordinator at the vocational training center, came up with a solution. She helped us set up a regular roommate rental agreement with Doug, which allowed him to legally remain in our home. Doug now rents a room from us, and we provide 24-hour support. Doug’s family agrees that we should work with whomever we choose to provide Doug’s activities and therapies; most of the time these are provided by Doug’s friends and family.
Today, twenty years later, our situation doesn’t feel “special” to us; it feels just like what we had envisioned from the start: a family life for Doug. We often see Doug’s brother Bruce, and he and Doug like to visit their favourite pancake house for special meals. Doug loves seeing his brother Rick when he comes back to the US for visits. Doug is now 72 years old, and as happens with us all, the years are changing him. While his mind remains sharp, he has some physical limitations. He has painful arthritis, and often needs to sit down to rest. But Doug continues to enjoy an active, engaging life. If you let him he’d drink coffee all day. His favourite game show is The Price is Right, and he’s a big fan of DC comics. He enjoys rock and roll, country, and gospel music. Doug loves spending time in the garden, pulling weeds or raking leaves. He has been known to yell at the weather person on television if the forecast is rain. Doug loves a good party, especially if there is cake involved, and he especially loves celebrating his birthday. For one memorable occasion, we travelled halfway across the country so Doug could share a very expensive cup of coffee with a friend who was also celebrating a birthday.
Our journey with Doug has had its twists and turns, but Mike and I have never questioned that Doug is meant to be with us. Doug trusts us, 100%. His family trusts and supports us as well. For any family considering a placement for their adult son or daughter I recommend looking beyond typical options. Trust yourself. Know your heart. With a little effort, and a lot of faith, you will find the perfect home for your loved one.
Written by MCC Editor, Janice Jencarelli Corrado.
Buy our magazines online; subscriptions and single copies available. Start your subscription straight away. We post WORLDWIDE.
‘Making Chromosomes Count‘ magazine is your guide through the Down syndrome community. MCC gives you all the flexibility you want when ordering your magazines. You can either go for a one-year subscription or buy one copy at a time. If you choose a magazine subscription, you’ll even be able to start with the current issue if it’s in stock. A magazine makes a great gift, whether it’s a subscription or just a copy or two of a high quality publication, why not treat your friends and family.
We stock all our magazines and send them out ourselves, directly to you; no delay.
We are always pleased to hear feedback, good or bad, as we keep developing our services. Email – MakingCCNews@gmail.com.
Request your free copy at MCCGrabYours@gmail.com if you are an expectant/expecting/new mum (0-1 year old). 100% of funds collected will go towards the continuation of the printing and distribution of the MCC magazine.