Who would take care of a stranger?

Date: 09/12/2018

Rhode Island

Carlos was diagnosed with Angelman syndrome, cerebral palsy, and intellectual and developmental disabilities, and has always needed 24-hour care.

He had lived with his mother through young adulthood, but her declining health necessitated a shared living arrangement for Carlos’ care requirements to be met. When the family contacted LifeShare, he was paired with a LifeCoach named Henry, and home care provider, Ernest, and together they sought the right solution for Carlos.

“When we first heard about the LifeShare program, we were very skeptical,” said Donna, Carlos’ aunt and guardian. “At the time, Carlos was a 22-year-old man trapped developmentally at a nine-month-old level. We thought, ‘Who would take care of a stranger with that many needs?’”

Ernest is the LifeShare Shared Living Provider who opened his home to Carlos, offering care, support and teaching. At the time he moved in with Ernest and his family, Carlos had an unsteady gait and used a wheelchair, and he was not involved in the community – there just were not many activities that he enjoyed. Ernest and Henry worked hard to improve these limitations and remove the barriers in Carlos’ life.

Fast-forward four years through LifeShare’s programs, and the world is now very different for Carlos! He walks well on his own and now dances to all different genres of music. He attends a LifeShare, community-based day program and receives one-on-one support from Henry to access the community on a regular basis. He’s made friends and contacts, and although Carlos is non-verbal, he communicates by smiling to indicate if he is pleased when asked a question, and also hugs people with whom he is familiar.

Carlos enjoys spending time with Ernest’s family watching movies with the adults and cartoons with the kids. Ernest says Carlos is “the life of the party during family gatherings, full of energy yet gentle around younger children,” and that he has had a remarkable impact on their home.

It’s easier visiting with his own family now, too. Carlos’ grandmother says that since being in the LifeShare program, he acts more “mature”, sits calmly on the couch, walks around the house, and goes to the kitchen counter if he wants something to eat or drink.

“We cannot thank Ernest and Henry enough for the respect, love and care they show for Carlos,” says Donna. “It shows each time we see Carlos with a haircut and a shaven face, tasks that are not easy to accomplish.

“Carlos going into the LifeShare program was the best decision we made for him. He’s 26 now, has his own room, and lives comfortably with Ernest and his family. These are things we never thought would be possible before the LifeShare program.”

If you would like more information about becoming a Shared Living Provider, click here and/or complete the brief provider questionnaire and a LifeShare representative will be in contact with you.