The COVID-19 pandemic is posing special problems for the families of adults with developmental disabilities — a particularly vulnerable population that relies on a network of state-funded supports to navigate the routines of daily life.
Joann Davis is worried about her 44-year-old son, Scott, who has Down syndrome, Type 2 diabetes and is in the early stages of dementia. Days of being in quarantine — cut off from many of the services that give his life structure — have taken a toll, both mentally and physically.
“Things have been very rough since this pandemic,” she said.
Davis worried that Scott and the more than 24,000 other adults like him in New Jersey are being overlooked during the coronavirus outbreak.
“I think they are being put to the bottom of the list as far as care,” she said. “If any of us here should become sick, we would quarantine here and I will not take him to any hospital because he would be totally confused.”
Nearly 25,000 adults are eligible to receive services funded by the state Division of Developmental Disabilities. Most live in the community, either with their families or in a community residence such as a group home, run by private groups with state support.
Some 1,200 continue to reside in five state-run developmental centers, down from 10 such facilities a generation ago. The move reflects a policy decision by state officials that favored community placements over institutions as better suited to the needs of the developmentally disabled, with the state spending money directly on support services rather than on such things as the maintenance of aging buildings.
As of Sunday, according to Division records, 117 people in community settings had tested positive for COVID-19, in both group and family homes, and 23 had died. In the developmental centers, there were 51 positive cases, and three deaths.
Amid the pandemic, the state has altered many of the services offered, over concerns about spreading the virus by direct contact, allowing services to be delivered remotely instead through video conferencing.
Davis said her son’s schedule “has been totally disrupted. He has three support buddies that he goes out with, and they take him bowling, they take him swimming and they take him to the gym,” she added. “This is part of his weekly routine. He hasn’t gotten a weekly routine now for quite a while.”
Davis said Scott, who requires around-the-clock personal care, has had no access to home health aides.
“He doesn’t understand,” she said. “Every day I go through the same series of questions with him again. He’ll ask if the virus is gone and I’ll say no. And a half hour later he’ll ask me again, can I go swim. So it’s been extremely rough since this has all started.”
Paul Aronsohn, the one-time mayor of Ridgewood, runs the state Office of the Ombudsman for Intellectual or Developmental Disabilities and Their Families, which has the mission of advocating for the developmentally disabled and their families in New Jersey.
He said that, while this can be an extremely challenging time, families should know the state is working to make sure that those with intellectual or developmental disabilities are not forgotten.
“This administration, and in fact a lot of our government officials across the state, have made people with disabilities a priority,” he said.
Tara Roberts is in charge of community relations for JESPY House, a community-based nonprofit that offers the intellectually and developmentally disabled residential services and resources to achieve independence. She said the pandemic has changed the day-to-day lives of many.
“People don’t understand that a typical client has six to seven interactions with staff every single day,” she said. “They might see their case manager, they might go to work, the might do five or six recreation activities, the Friday night dinner doesn’t take place anymore.”
Staffers at the South Orange facilities have made adjustments, including offering some services remotely.
“We made the decision on March 13 to get as many clients home as possible,” she said. “We are using Skype, Zoom, Facebook Messenger. Our clinical team is still providing services though a secure website.”
And the nonprofit’s work continues for those living at the group home.
“We have been really lucky in terms of getting groceries delivered,” she said. “Our house is fully staffed. We have 12 staff working 12-hour shifts. When someone goes in the house their temperature is taken. We are providing our own PPE’s. We haven’t received any from the state yet.”