Jim is an easy-going, 54-year-old man who loves to play games, especially dominoes. He pays attention to details and makes deliberate plays after careful consideration. Jim really likes to win, but he’s never a sore loser if things don’t go his way. His sense of humor adds to the fun.
Dawn loves to play games, whether that means board games at the dining room table or yard games like croquet out back. She’s also a recent empty nester who has room for an adult with cognitive or intellectual disabilities in need of a permanent, caring home.
Someone like Jim.
Since last July, Jim has lived in Dawn’s home as a member of her family. The two were connected through a CHD program called Shared Living, which helps people add an adult to their family through a process similar to adoption but with elements of match-making. The goal is to make the client (Jim) a part of the daily life of the provider (Dawn) to enrich the lives of everyone involved.
The idea behind Shared Living is to offer an alternative to the 24-hour group home for individuals receiving services through the Massachusetts Department of Developmental Services (DDS). Shared Living providers welcome a client into their stable and caring home environment while providing an appropriate level of care. Providers earn tax-free income based on the level of care the client requires, and respite care coverage is included.
Jim is fairly independent and previously lived on his own, but a medical condition requires him to eat a strict diet and he wasn’t sticking to it. Since his health depends on eating right, he went to a 24-hour group home, but he didn’t like the environment, which was very structured. After living on his own for many years it simply wasn’t what Jim wanted.
At the time, Kimberly M. Puffer, Assistant Program Director for CHD Meadows Homes, was leading a team developing the Shared Living program. She knew Jim from his participation in day programs, understood he wasn’t happy in a group home, and thought he’d be an ideal candidate for Shared Living. She just needed to find him the right match.
Dawn had been working as an office administrator for about 10 years, but prior to that she worked in direct care for abused and neglected children in residential homes. That gave her some experience working with people in need of special care. She also had some experience with respite care for a developmentally disabled adult.
“My brother has a developmentally disabled gentleman who lives with him, and my mother was providing vetted respite care,” said Dawn. “The more times she did that, the more I thought about doing something similar. With my adult sons away at school or working, there was room in my home, and also in my heart, so I started looking into what would be involved. My initial contacts with a placement agency didn’t work out as I’d hoped, I think mostly because the match wasn’t there. That match is so important.”
Not easily discouraged, Dawn continued her search and connected with Kim Puffer at CHD. “I had met Kim when she dropped off the gentleman for respite care with my mother,” said Dawn. “As it happens, he is served by CHD. I had heard such wonderful things about the support and good management of the agency, that I decided to seek out opportunities there. This was right about the time that CHD was starting their new Shared Living program, so I was connected with Kim. The timing almost felt like divine intervention when Kim called and said, ‘I have the right individual for you.’ When Jim and I met, we both knew right away. I almost had to pinch myself because it worked out so perfectly.”
Dawn went through thorough screening as required by CHD and the DDS. In addition to a background check on the prospective provider and family, DDS conducts a detailed house inspection, everything from water temperature regulations to fire extinguishers and escape routes in case of fire. There is also confirmation of required training in areas such as first aid, CPR and medication supervision. Because the goal is to find a long-term match, screening also takes into account shared interests and lifestyles.
Shared Living providers are expected to help the individual with transportation to medical appointments, provide medication supervision as needed, and assist with financial transactions. The Shared Living provider may also need to assist with meal preparation and other care tasks. It’s possible for a Shared Living provider to work regular hours during the week since many clients participate in activities or have a paid job during the day. Some higher functioning clients may be able to be dropped off in the afternoon and stay at home for a couple hours until a provider gets home from work.
Shared Living providers receive a stipend, determined in collaboration with the DDS, to cover costs such as housing, food and transportation. For a client who is lower functioning and needs more intensive care, support and service, the stipend would reflect that required level of care. For a higher functioning client with few medical needs, the stipend would be less. The stipend does not pay the client’s personal or recreational expenses, which can be paid for by the client with earnings from a job or benefits such as Social Security. Respite services are also available when a provider needs to be away or for an occasional break.
A new Shared Living arrangement doesn’t always fall together as quickly as it did for Jim and Dawn, and it wasn’t long before Jim moved into his new home. Initially Kim stopped by twice a month to see how Jim and Dawn were getting on. Those visits are now monthly, though Kim calls regularly to check in.
Living with Dawn, Jim can do his own thing a great deal of the time. CHD provides direct care staff who comes to see Jim on Mondays and Wednesdays. The staff supports Jim in a variety of ways, including taking him for appointments or to stores that aren’t open outside of Dawn’s work hours. The direct care staff, who is supervised on an ongoing basis, was hired by Kim specifically to fit Jim’s personality and interests.
“Jim is independent,” said Dawn. “He can be home for periods of time on his own. Not every person in Shared Living can do that. I do more for him than he probably needs, but that’s likely because I’m a recent empty nester. He’s neater than my kids were!”
Outside of work hours, Jim and Dawn do the same sorts of things any family does, from picking up groceries to going to the movies to going on vacation. Her sons and other relatives all welcome Jim as family. “Jim loves to play games, just like I do,” said Dawn, sitting at the dining room table as she and Jim turned all the dominoes blank side up to start a new game. “We’ve been known to play this until 11:00 or midnight. Jim played dominoes before he came to live here and sometimes I think he didn’t want us to think he was as good as he was.” Dawn laughed as Jim tried to hide a smile.
Dawn recalled a recent weekend when her two adult sons were home. “We all went to see Stephen King’s IT at the movies,” Dawn said. “Jim laughed and I screamed! Then the next day Jim came with us to our annual family picnic. There were about 30 family members there and Jim met them all. He played cornhole and had a blast. For Shared Living to work, you need to find a match with someone who will become part of your life and how you live, and Jim enjoys the same things that we do. He’s not a complainer and he goes with the flow. He’s great to have in the family.”
Now that she has several months of experience as a Shared Living provider, what would Dawn say to someone who wonders about opening their home to a developmentally disabled adult? “If you’ve never been involved at any level caring for a developmentally disabled person, start by providing respite care. Get a feel for it and find your strengths. When you fill out the screening paperwork, be specific. Kim and her staff can only be as good as the information you give them. When they ask what you want, honesty is so important. There’s no judgment; they want a match.”
Kim said that CHD’s Shared Living program is open to families of all types and sizes. “Whether you own a home, or rent a house or apartment, the most important requirement is that you are welcoming. Shared Living is successful and growing largely due to word of mouth arising from the good relationships that providers and clients form by sharing life, as a family.”
To learn more, visit Shared Living’s Homepage, call a CHD Home Finder at 413-333-5093 or email sharedliving@CHD.org.