Nearly 200 members of the disability rights group ADAPT met with newly appointed Long-term Care Commission member Henry Claypool, a wheelchair user, during their April action in Washington D.C., to discuss their experiences in institutions and the difficulty of returning to live in the community.

James Sweatt, 48, of Houston, Texas, who has multiple sclerosis, spent a year in a nursing home recently because nobody was able to monitor his diabetes. Sweatt says the care he received was poor and he was dropped on the floor while being transferred with a Hoyer lift. Sweatt says he fought hard to be able to leave the institution.

Sweatt never thought he’d be in an institution, but now he’s pushing for changes in the long-term care system. As one of more than 30 ADAPT members who gave testimony, Sweatt told Claypool about his nursing home experience and pressed for more affordable and accessible housing options. He also wants caregivers to earn a better wage for the valuable assistance they provide.

Sweatt wants people with disabilities to know help is out there, but he says people need to go get it. “You can’t sit on your butt and think it’s going to come to you,” he says.