DANVERS — An advocacy group representing families of people with developmental disabilities says state officials have been slow to react to the coronavirus pandemic — putting thousands of developmentally disabled and autistic residents of group homes and other facilities, and their caretakers, at risk.
"You wanted to believe they had a plan," said Colleen Lutkevich, executive director of the Massachusetts Coalition of Families and Advocates. "They have no plan."
Instead, she said, there is a "patchwork" of recommendations and policies that contradict each other posted on the state agency's coronavirus website page.
"It's frightening, because we have a very vulnerable population and our fear is they're being pushed aside," Lutkevich said.
Of approximately 40,000 individuals in Massachusetts receiving some type of services from the Department of Developmental Disabilities, nearly one-fourth, or 9,195, are living in group homes and intermediate care facilities, according to figures provided by COFAR. Thousands of others are living in adult foster care or in independent living apartments.
In comparison, there were 15,477 inmates in Massachusetts state prisons and houses of correction as of March 23, according to the state Department of Corrections weekly census.
Lutkevich said that while inmates have attorneys who have been able to advocate for them and draw significant attention to concerns about the virus spreading through prisons, and other vulnerable populations such as seniors and homeless people can speak up, there's been little attention to developmentally challenged individuals.
"If someone from Pine Street Inn can get a bed when he's ill, people with disabilities should get the same option," said Lutkevich, referring to the plan announced this week to open up space at Newton Pavilion for the homeless. "They can't self advocate, they can't speak. Families have to do it for them."
The agency, in a statement, defended its work so far, saying that they are continuing to work on developing guidance in an evolving situation.
“During this emerging, unprecedented public health emergency, the Department of Developmental Services is working closely with the Department of Public Health to issue clear guidance as the situation evolves to protect the health and safety of the individuals it serves and its vendors,” spokesman Christopher Klaskin said in a statement from the agency Friday.
But Lutkevich and others at COFAR say that planning should have already taken place.
While there haven't been any outbreaks to her knowledge, "I think its a matter of time. It's congregate living, people coming and going, taking care of individuals who don't have the ability to care for themselves."
The group questions one recommendation that residents who are diagnosed be isolated in a bedroom. but in a small group home setting, where residents share common areas and bathrooms, that may not do much to curb the spread.
One set of guidelines for providers appears to suggest that residents of group homes be removed if they are infected, but there is no plan for where those residents would be taken.
Other documents suggest that any resident of a home suspected of having close contact with someone with the virus should be removed from the residence, even though in group homes, anyone else living there would also have had close contact with that resident.
"So the departmental directive would imply that if one person is exposed or is sick with the virus, everyone would need to be quarantined, meaning they would have to be taken somewhere else for 14 days," COFAR said in its release. "The problem is compounded by the fact that DDS has no plans for how to remove and quarantine infected residents safely, promising only to develop them in the future."
Lutkevich suggested that day programs that were ordered closed due to the pandemic could be temporarily used to house residents who test positive, staffed with recently furloughed or laid-off workers from those programs.
Northeast Arc chief executive officer Jo Ann Simons acknowledged that "there are some questions that we are asking that they don't have answers for."
And, she conceded that for now, there are no plans to move residents out of any of the 34 group homes operated by her agency if a resident contracts coronavirus, saying the plan for now is to isolate a resident in his or her room.
But she went on to praise the work of public officials. "I have found in this crisis that our state partners have performed with extraordinary sensitivity and support, and that is allowing us to provide the 24-hour services we do. While we don't always agree on everything, in this case I applaud the leadership, from (Massachusetts Health and Human Services Secretary) Marylou Sudders right down to the leadership at the local level."
Simons also ran through a list of what their program is still able to offer, including early intervention, and efforts to provide services through teleconferencing and a mobile workforce. They are still able to enroll children, home visits are being done through zoom meetings, and she touted plans to open a new day facility inside the Liberty Tree Mall.
She also said she's ordered 600 bottles of hand sanitizer, due for delivery this weekend, and just placed an order for $180,000 worth of additional personal protective equipment for workers, which she hopes will arrive in two to three weeks.
"I'm confident we're going to be able to make it for the next two to three weeks if we don't have a massive outbreak," said Simons.
Courts reporter Julie Manganis can be reached at 978-338-2521, by email at firstname.lastname@example.org or on Twitter at @SNJulieManganis.