When Donna Jay was just five years old, she says a doctor told her parents that she had to leave home and live in an institution.
“The doctor said, ‘You can’t take care of her. She’s not going to be able to walk, talk, read. Or anything.’ So, they said: ‘Okay,’” Jay recalled.
She ended up living in several institutions designated for people with intellectual and developmental disabilities, and she hated it. She says there was a litany of problems, including rampant cockroaches and being forced to take group showers.
“No privacy. No door. No nothing. Everybody had to shower together. I didn’t like that,” Jay said of her time — now many decades ago — at Hogan Regional Center in Danvers, Mass.
Jay eventually moved to a small group home. And now, at age 65, she lives independently in a condo in Salem and is finally happy with the spot she calls home. “I’m in a good place,” she said.
Jay’s path from living in an institution to living in the community follows a national trend.
A new report from the Administration for Community Living in the U.S. Department of Health and Human Services shows big changes in the lives of people with intellectual and developmental disabilities. Using 30 years of data, the report found far fewer people are housed in institutions, and many more are working in the community. However, some advocates say there need to be more changes, arguing that the push to move people into a community setting does not necessarily mean they are part of the community.
Nationwide, the report found that four out of every five people who lived in an institution in 1987 moved to a community home by 2017. Given this dramatic shift away from institutions, more than a dozen states no longer have any state-run institutions, including most of New England as well as Alabama and Oklahoma. Yet, Massachusetts is not on that list. There are still two institutions open in the state, including Hogan Regional Center.
The Commonwealth, however, stacks up far better when it comes to the number of people with intellectual and developmental disabilities working in the community. As of 2018, 40% were employed, compared to 21% nationally.
“Massachusetts is not that far from the top and has made substantial investment in recent years, particularly over the last five to ten years,” said John Butterworth, a senior research fellow at the Institute for Community Inclusion at UMass Boston who helped author the report.
He said that there has been a big leap overall in the number of people with intellectual and developmental disabilities who are employed in the community, but there’s also huge variation between states. In the state of Washington, 85% of people with developmental disabilities are working in the community. In Hawaii, that figure is under 5%. He says the gaps between state outcomes are related to how much each state prioritizes the area.
“That tells us that policy and strategy make a difference and how states get funding and invest in training really matter in terms of the outcomes," Butterworth said.
Rick Glassman, the director of advocacy with Massachusetts’ Disability Law Center, points out that living and working in the community is often an important part of having a full and fulfilling life. He said people have thrived in this setting.
“We've seen that many people have been able to reach results that no one ever thought previously would be possible,” Glassman said.
He said that moving away from institutions was not an easy process, but that changes in the past few decades have been extraordinary.
“This has been an epic change and one that's been of enormous benefit,” Glassman said. “It is night and day. But I don't think we ever really finished the job. We've never made all the financial commitments that we need.”
A report from the state auditor found that Massachusetts has spent about a billion dollars a year in recent years on community-based services for people with disabilities. Glassman said some of that money could be better spent. For example, he suggested that the money for day programs, where people with disabilities are in an isolated setting, should instead be put towards job training that’s in the community.
Anne Fracht, a self-advocate who is the immediate past chairperson of Massachusetts Advocates Standing Strong, also thinks the job is not yet done. She said that just moving people into group homes in the community isn’t enough. When she lived in one, she said, they had to move as a group, they couldn’t attend religious services of their choice, and the community didn’t want the group home on their block.
“We weren’t of the community,” Fracht said. “And that's the whole thing, if you’re not of the community, you’re just in a group home in the community.”
She said she’d like to see a focus on individualized opportunities for people with intellectual and developmental disabilities and also a focus on helping the broader community to really, truly welcome them.