The Star-Ledger

Date: 2007/03/02 Section: NEW JERSEY Edition: FINAL

Justices reject limits on aid to developmentally disabled
Ruling could allow thousands of families to qualify for help


The New Jersey Supreme Court yesterday overturned regulations that denied state aid for people with developmental disabilities who could not prove they were substantially impaired before age 22.

In a unanimous opinion that could allow thousands to qualify for help, the court said the Division of Developmental Disabilities “exceeded its power” by setting a limit that was not in state law, and ordered it to rewrite its rules.

“This is a victory for thousands of families who spend years caring for their relatives without seeking state help,” said Public Advocate Ronald K. Chen, whose office filed a friend-of-the-court brief in the case. “It means these families will be able to ensure their loved ones are well cared for as parents become too old to continue to provide that care.”

The case involved a 55-year-old man, identified in court papers as T.H., who suffers from Asperger’s syndrome, a mild form of autism. He had lived at home until 2000, when his mother died, and his family sought financial help from the state after exhausting the family estate to pay for care in a group home, which costs about $125,000 a year.

The state Division of Developmental Disabilities quickly denied the request because the family lacked “concrete data,” such as medical records, to show that T.H. had Asperger’s before his 22nd birthday.

His family said such records did not exist because T.H. had been cared for at home for so long.

“With his age, I could find no background to produce proof,” T.H.’s sister, Jean Small, said in a telephone interview yesterday. “School records were gone. The family doctor was gone. He had seen a psychologist early in his childhood, but we don’t know who he was since we were all so young. And, of course, this was before the time of knowing what Asperger’s was.”

The family challenged the decision, arguing that the age restriction went against state law and that the state was wrong to reject the eyewitness testimony of family members.

An appeals court upheld the division’s decision, but the state’s highest court yesterday agreed with the family.

It said state law provides for services to those whose developmental disability was “manifest” before age 22, but that the division’s rules wrongly required evidence of “substantial functional limitations” in three or more areas of major life activity by that age.

The court also said that in writing new regulations, the division should allow family anecdotes to be considered as evidence in cases where no records exist.

Experts say that provision is particularly important in developmental disability cases because many ailments now recognized by the medical community were not identified until recent years. The court ruling noted that Asperger’s was not recognized until the 1990s.

“We can think of no more relevant and probative evidence than testimony of relatives who lived with T.H. and his problems — year in and year out — over a lifetime,” Justice Virginia Long wrote for the court. “To rule otherwise would be to punish families that choose to care for their disabled children in lieu of placing them in a facility.”

Attorney S. Paul Prior, who represented T.H. in the case, said the decision will allow his client to receive state help for housing, therapy and possibly vocational services.

Small said her brother probably won’t understand the breadth of the ruling, but will grasp the fact that it will allow him to remain at the group home.

“He’ll understand he’s got some aid to stay where he is and that will make him very happy,” Small said. “He thought he may have to go to a nursing home and he was very displeased by that.”

Pam Ronan, spokesman for the Department of Human Services, which oversees the division, said the department was “studying the decision and the implications” to determine how many more families with developmental disabilities will be able to apply for aid.

Some estimates say at least 19,000 New Jerseyans with developmental disabilities are living with older caregivers and have never requested aid from the state, according to the Public Advocate’s Office. That does not mean all of them will seek money from the state because of the ruling.

“It will actually create an incentive for parents and loved ones to care for their family members,” Chen said. “This is good for families and it helps conserve state resources.”