East Brunswick parents highlight struggles with adult day care programs remaining closed

EAST BRUNSWICK–For numerous parents who have children who have reached adulthood with developmental and/or physical disabilities, adult daycare programs are an essential part of their daily lives.

When the COVID-19 pandemic began in March 2020, all adult day care programs were ordered by the state to close until further notice.

Department of Human Services Communications Director Tom Hester said a day habilitation program is typically a facility-based program that provides participants with the education and training to acquire the skills and experience needed to participate in the community. Services are provided during daytime hours and are tailored to meet the individual needs of the participant.

Hester said the health and safety of individuals with intellectual and developmental disabilities is paramount, and all decisions regarding closure and reopening of congregate day programs are guided by data and improvements in public health. 

Resident Thomas Cregge said his son has autism, severe cerebral palsy, reflux disorder, and can see but is classified as legally blind.

In June 2020, Cregge said his son officially graduated from the Children’s Center of Monmouth County, but like most students never had a graduation ceremony.

Cregge said his son was enrolled in an adult day care program in Piscataway as of February 2020; however, he still has not returned back since the start of the pandemic.
“We never had a chance to see him in the program because it closed in March 2020 shortly after being accepted,” Cregge said. “At the children’s center, he was receiving speech, occupational and physical therapy. Outside of school, he was also receiving private speech and physical therapy which shut down completely.”
Cregge said there have been no remote or virtual lessons or programs since March 2020.
“My son’s behaviors have really ramped up. Where his behavior before the pandemic wasn’t bad at all now they are atrocious. He shows signs of obsessive-compulsive disorder (OCD) at times,” Cregge said. “Physically, he has lost a great deal of what he had achieved. For instance, he was able to get up from laying flat on his back to a sitting position by himself; now he can’t do it without assistance. His doctor had gotten him to walk with assistance in a walker for quite a nice distance; now he can’t stand up on his own.”
Hester said to clarify, day programs were closed on March 17, 2020, and were allowed to reopen at reduced capacity of 25% from Sept. 21 to Nov. 25, 2020. They were then allowed to reopen as of March 29 if the criteria were met.
Adult day care programs, Hester said, are not state-run programs but are programs that contract with the state to provide services.
“Each individual under the services of the Division of Developmental Disabilities chooses, or requests, to have auto-assigned a support coordination agency to work with. That agency assigns a support coordinator who works with each individual and family to help connect them with needed services and supports,” Hester said. “As day programs reopen, the individuals’ support coordinator can assist them in identifying available services. Should a support coordinator or family need assistance, the division is available to assist.”
Cregge said COVID-19 has stopped all educational progress.
“In school [my son] was progressing nicely. At home, if you try teaching him anything the autism kicks in. ‘This is home, not school. We don’t do this at home.’ So nothing gets done, it’s just another fight we can’t win,” Cregge said.
Cregge said his only hope is that the adult day care program will open.
“I teach in a school that has been open for face-to-face learning since September. Why are we successful and yet his program can’t even open?. … The frustration is tough to handle,” Cregge said. “By the way, need I say my son being home now for over 400 days has put a terrible strain on the family too.”
Cregge said he believes the program has opened but it can’t find anyone to hire to be his son’s one-on-one aide. Therefore, he was still at home for the 438th consecutive day, as of press time.

The Department of Human Services released updated reopening requirements for congregate day programs for individuals with intellectual and developmental disabilities, according to a prepared statement from the Department of Human Services dated April 22.

Under the guidance, the Division of Developmental Disabilities-funded day programs may now reopen with capacity limits tied to the COVID-19 Activity Level Index (CALI) for the region in which they operate, according to the statement.

Previous requirements prohibited program operation in regions with high and very high CALI designations.

Operating capacity under updated requirements are as follows:

  • 25% in very high (red), previously not permitted to operate;
  • 50% in high (orange), previously not permitted to operate;
  • 50% in moderate (yellow), same as previous; and
  • Full capacity in low (green), previously permitted to operate at 50% capacity.

Program providers who elect to open or reopen in the Very High, High and Moderate regions must inform participants of the region’s designation and that there is an increased risk of COVID-19 transmission in the region so that informed decisions on participation can be made by individuals, families and guardians, according to the statement.

Programs may reopen as early as they are able to come into compliance with the Congregate Day Program Re-Opening Requirements, according to the statement.

Vaccination is not required for attendance, but all individuals are encouraged to be vaccinated, according to the statement.

The guidance notes that day program characteristics such as the use of communal spaces and shared transportation have the potential of increasing the risk of COVID-19 spread, according to the statement.

Resident Richard Reed said his daughter who has autism graduated from high school in 2013 and is currently enrolled in an adult day care program.

Reed said before the pandemic his daughter’s adult day care program was very good; however, when the pandemic started last March, his daughter had been home from March to September 2020. She went in October and November 2020, but has been back home since December.

Since her program closed in March 2020, Reed said his daughter has been attending her program remotely.

“The pandemic has had minimal effect on her, she is a very happy person, but I am concerned about her lack of social interaction and physical activity,” Reed said.

Thankfully, Reed said his daughter’s program reopened in late April of this year.

For more information, visit www.state.nj.us.

Contact Vashti Harris at [email protected].