03-02-2007, 05:01 PM
Caregivers of disabled gain a say over aid
Friday, March 2, 2007
By LAURA FASBACH
TRENTON BUREAU
The New Jersey Supreme Court has made it easier for adults with developmental disabilities and their families to get help acquiring housing, respite care and other state services.
The top court unanimously struck down rules that determine the qualifications for these services. The decision, handed down Thursday, could affect thousands of families that have long cared for a loved one on their own before coming to the Division of Developmental Disabilities for help later in life, experts said.
In the past, families were denied services if they could not prove to the division that their adult relative had a disability prior to age 22, the state and federal benchmark.
That meant families had to dig up old documents, such as medical and school records. Finding such documentation has been difficult for some families seeking care for adult children, some more than 50 years old or whose diagnoses were not formally recognized by the medical community.
Thursday's ruling relaxes the standard by giving greater weight to a family member's personal account of their loved one's disability.
"To rule otherwise would be to punish families that have chosen to care for their disabled children in lieu of placing them in a facility," the justices wrote in their decision.
The ruling stems from the case of "T.H.," a 55-year-old Burlington County man with Asperger's syndrome, a form of autism. T.H., whose identity was not disclosed to protect his privacy, lived with his parents until well into his 40s, when both parents died.
After their deaths, T.H.'s sister applied for housing and other services for her brother, but was rejected. The Division of Developmental Disabilities said the testimony in the sister's application was "anecdotal" and did not properly document her brother's disability, according to the court ruling. An administrative law judge sided with the division, and it was later upheld by the state court of appeals.
The state Supreme Court said the division's regulations overstepped the Developmental Disabilities Act and said it was "inappropriate" to reject testimony of family members.
Paul Prior, the Florham Park attorney who represented T.H. and his family, said the ruling was a victory not only for his clients but for families of developmental disabled adults throughout the state.
"Many families choose to provide for their loved one at home," Prior said in an interview. "But as parents age and eventually die, that becomes unrealistic as time goes by. To be punished for such a choice is blatantly unfair."
Prior said that under the current structure families that seek services early on are at an advantage over families that wait. In the case of T.H., for example, Prior pointed out that Asperger's syndrome was not recognized by the medical community until the mid-1990s, years after T.H.'s 22nd birthday.
Pam Ronan, a spokeswoman for the Division of Developmental Disabilities, said the state looks at each application for services on an individual basis.
"We will review the decision and see where and how to appropriately amend the regulations," Ronan said.
Ronan said there was no way to quantify how many families would be affected by the court decision. But others estimated that thousands of adults with developmental disabilities and their loved ones would be affected.
Public Advocate Ronald Chen, whose office filed a friend-of-the-court brief, said the ruling ensures a brighter future for developmentally disabled adults.
"This addresses a much larger problem," Chen said. "Prior to this ruling, people with developmental disabilities who lived with aging caregivers faced a very scary and uncertain future."
Chen said these families can now "rest a little easier, knowing they have options" because of the ruling.
According to a 2005 University of Colorado study, there are an estimated 19,000 New Jersey residents with developmental disabilities who live with caregivers older than 60. These residents are not currently registered to receive services from the state, the study points out.
"This is a godsend," said Assemblywoman Joan Voss, D-Fort Lee, whose 32-year-old son has Asperger's.
Tom Baffuto, executive director of The ARC of New Jersey, said he often hears from families who apply for services and are rejected.
"This will give hope to families who just accepted the pat response and didn't pursue it further," Baffuto said.
Friday, March 2, 2007
By LAURA FASBACH
TRENTON BUREAU
The New Jersey Supreme Court has made it easier for adults with developmental disabilities and their families to get help acquiring housing, respite care and other state services.
The top court unanimously struck down rules that determine the qualifications for these services. The decision, handed down Thursday, could affect thousands of families that have long cared for a loved one on their own before coming to the Division of Developmental Disabilities for help later in life, experts said.
In the past, families were denied services if they could not prove to the division that their adult relative had a disability prior to age 22, the state and federal benchmark.
That meant families had to dig up old documents, such as medical and school records. Finding such documentation has been difficult for some families seeking care for adult children, some more than 50 years old or whose diagnoses were not formally recognized by the medical community.
Thursday's ruling relaxes the standard by giving greater weight to a family member's personal account of their loved one's disability.
"To rule otherwise would be to punish families that have chosen to care for their disabled children in lieu of placing them in a facility," the justices wrote in their decision.
The ruling stems from the case of "T.H.," a 55-year-old Burlington County man with Asperger's syndrome, a form of autism. T.H., whose identity was not disclosed to protect his privacy, lived with his parents until well into his 40s, when both parents died.
After their deaths, T.H.'s sister applied for housing and other services for her brother, but was rejected. The Division of Developmental Disabilities said the testimony in the sister's application was "anecdotal" and did not properly document her brother's disability, according to the court ruling. An administrative law judge sided with the division, and it was later upheld by the state court of appeals.
The state Supreme Court said the division's regulations overstepped the Developmental Disabilities Act and said it was "inappropriate" to reject testimony of family members.
Paul Prior, the Florham Park attorney who represented T.H. and his family, said the ruling was a victory not only for his clients but for families of developmental disabled adults throughout the state.
"Many families choose to provide for their loved one at home," Prior said in an interview. "But as parents age and eventually die, that becomes unrealistic as time goes by. To be punished for such a choice is blatantly unfair."
Prior said that under the current structure families that seek services early on are at an advantage over families that wait. In the case of T.H., for example, Prior pointed out that Asperger's syndrome was not recognized by the medical community until the mid-1990s, years after T.H.'s 22nd birthday.
Pam Ronan, a spokeswoman for the Division of Developmental Disabilities, said the state looks at each application for services on an individual basis.
"We will review the decision and see where and how to appropriately amend the regulations," Ronan said.
Ronan said there was no way to quantify how many families would be affected by the court decision. But others estimated that thousands of adults with developmental disabilities and their loved ones would be affected.
Public Advocate Ronald Chen, whose office filed a friend-of-the-court brief, said the ruling ensures a brighter future for developmentally disabled adults.
"This addresses a much larger problem," Chen said. "Prior to this ruling, people with developmental disabilities who lived with aging caregivers faced a very scary and uncertain future."
Chen said these families can now "rest a little easier, knowing they have options" because of the ruling.
According to a 2005 University of Colorado study, there are an estimated 19,000 New Jersey residents with developmental disabilities who live with caregivers older than 60. These residents are not currently registered to receive services from the state, the study points out.
"This is a godsend," said Assemblywoman Joan Voss, D-Fort Lee, whose 32-year-old son has Asperger's.
Tom Baffuto, executive director of The ARC of New Jersey, said he often hears from families who apply for services and are rejected.
"This will give hope to families who just accepted the pat response and didn't pursue it further," Baffuto said.