ISELIN, N.J. — Cynthia Allen thought the crisis was over.

Her son, 34-year-old Nicholas Aquilino, a nonverbal man with severe autism, had just undergone oral surgery at a hospital in Cape May County to remove two rotting teeth. The pain had sent him into such an aggressive spiral that he was biting and hitting the workers supervising him at the state-run Woodbine Developmental Center.

Allen thought her son was on his way back to Woodbine — his home for 11 years — when she got a call from the hospital with alarming news. Against her wishes as her son’s legal guardian, the state was sending her son to a different state institution, the Vineland Developmental Center in Cumberland County. Unlike Woodbine, she quickly would learn, Vineland would manage her son’s difficult behavior by medicating him with strong antipsychotic drugs and restraining his arms and legs, Allen said.

In Vineland’s care since Sept. 21, she said her son has lost more than 25 pounds and broken his foot. He’s supposed to be assigned one-on-one supervision, but she said no one can explain how he got the bruises she sees all over his body.

“They have excluded me and made decisions on their own,” Allen said. “I am worried to death about him. He doesn’t deserve this.”

Priscilla Quesada of Egg Harbor Township said she expects staff at the Hunterdon Developmental Center in Clinton to ensure her son, Brandon, a 24-year-old nonverbal man with severe autism, is using a speaking device that allows him to point to pictures on a screen to communicate his requests. But she says they don’t.

She said when she visits Brandon, he has had a black eye and bruises, as well as a listlessness she attributes to excessive medication. She also wants Hunterdon to stop forcing him eat minced food because they fear — baselessly, she contends — he is a choking hazard. He’s down to 133 pounds from 153 when he arrived 14 months ago. And she says she’s been told nothing about the status of an investigation of possible sexual abuse of her son, even though it’s required under state law.

“They don’t care that I am a guardian,” Quesada said. “If I don’t get him out of there, I am going to be burying my son.”

The struggles Allen and Quesada and their sons are facing are not uncommon. A survey of families by the New Jersey Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families found 47% of parents and guardians reported their loved ones with disabilities “experience severe challenging behavior involving self-injurious, aggressive and/or destructive behavior.”

The Ombudsman, in its annual report in May, said this is due “in part, to policies and practices that continue to make it difficult, if not impossible, for their families to gain access to the right mix of assessments, treatments, supports and services.”

New Jersey enacted a law in 2017 that, among other things, required group home providers and center operators to notify guardians within hours of accidents and injuries, depending on the severity.

Asked by NJ Advance Media to review Allen’s and Quesada’s court-approved guardianship papers, David Cohen, an attorney in Red Bank who specializes in cases involving nursing homes and institutions, said it appears their rights are not being respected.

“If there is a life-and-death decision and (the state) believes there is something wrong with the instructions from the family and guardian, they can apply to the court on an emergent basis to help him,” Cohen said. “But they cannot supplant them just because they want to.”

Allen’s attorney Hillary Freeman says the state unlawfully disregarded her rights as Nick’s legal guardian to determine where and how he lives. If officials believed she was unfit to direct his care, the state should have formally challenged her guardianship rights granted by a judge, whose 2007 court order described her as “caring, supportive and nurturing.”

“Legally, they cannot act unilaterally; they must go to court for any decisions inconsistent with her preferences and desires,” said Freeman. She plans to challenge the actions of the state Department of Human Services, which operates the developmental centers.

“This is awful. He is being abused and there is no investigation we know of,” Freeman added. “His safety is in danger and his life is in danger.”

The Department of Human Services declined to address the specifics surrounding the care of any developmental center resident or explain why the state has not gone to court to challenge the guardians’ authority.

“The health and safety of the individuals served by the department is always a priority, and decisions regarding their care are made thoughtfully with input from families and guardians,” Human Services spokesman Tom Hester wrote in an email to NJ Advance Media.

If guardians are displeased with the care their loved one is receiving, there is recourse by going to court, Cohen said.

Mercedes Witowsky, executive director of the New Jersey Council on Developmental Disabilities, a state advisory and advocacy group, said if the state is not complying with a guardian’s wishes, she recommends first complaining to the Division of Developmental Disabilities Hotline (800-832-9173), or contacting Disability Rights New Jersey, a nonprofit, federally funded advocacy organization. If that doesn’t work, talk to an attorney, she said.

Witowsky said she appreciates how serious the stakes are. “We have heard stories past and present about abuse, neglect and exploitation within developmental centers as well as community centers.”

Allen said she has contacted Disability Rights but also hired an attorney because she fears Nick is running out of time.

Disability Rights New Jersey declined to discuss specific cases it investigates. Jill Hoegel, its director of investigations and monitoring, said New Jersey enacted a law in 2017 that reinforced the importance of keeping guardians apprised and involved when there is an investigation into abuse, neglect or other injuries involving a person with a disability in the state’s care. This includes state-run developmental centers as well as state-licensed group homes.

“The Stephen Komninos law put a lot of things in place that weren’t in place before, such as the inclusion of guardians in the interview process and the notification about the outcomes. I think these are good things,” Hoegel said. But some families and guardians complain they are still left wondering what happened when a loved one is hurt.

“What I see most often are injuries (involving) someone who is nonverbal and cannot explain what happened, and no one else seems to know what happened. The inability to get an answer is frustrating,” Hoegel said.

Human Services spokesman Hester said the Division of Developmental Disabilities “values the role of family guardians. Each day, the division endeavors to meet the needs of the more than 1,000 persons it serves in its developmental centers. This includes having medical and professional staff collaborating with the guardian assigned to an individual, whether or not they are a family relation to the person. The vast majority of the time a resolution is reached that is agreeable to the guardian.”

“In a small number of circumstances, the division may not be able to reach a resolution that meets the expectations of the guardian,” Hester continued. “Examples of this could include requests for staffing adjustments or changes to vital medical or behavioral supports that are not supported in the client record. The division works to provide appeal rights in circumstances where that is appropriate.”

Quesada said she has tried to care for her son Brandon at home with her 19-year-old brother helping out, but he requires constant supervision to prevent him from hurting himself.

She said Brandon is acting out more aggressively the longer he remains at Hunterdon, which in turn makes it difficult to find him a group home or other setting. She has never seen Brandon so thin and distraught, often crying when their visits are ending.

“Because he is stuck in there and upset, he is acting out more to get attention. Negative attention is attention,” she said. “I don’t know what else I should do.”

Allen wants her son Nicholas to return to the Woodbine center — a place where he has encountered some rough treatment over the years but in hindsight she admits was far more patient with her son and more transparent with her.

In an Oct. 26 letter from the division’s Chief of Staff Carol Jones, Allen was notified that after a review, leaders determined he would not be transferred from Vineland back to Woodbine. The letter explains she can appeal the decision and ask the division to reconsider.

Allen said she most certainly will but it’s painful to see her son losing weight, in pain and anxious. She can’t imagine why the state is defying her wishes.

“Right now he is starving, he is injuring their staff and he is miserable. Not sure what is in it for them,” she said.

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