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Thomas Altruda, 38, at home in Manalapan during visit last week with his parents. Altruda, who has severe developmental disabilities and is medically fragile has lived at a facility in Texas for 9 years. His parents say he is thriving and don't want him to be moved.
(Frances Micklow/The Star-Ledger)
Betty Altruda looked over the document in front of her and just shook her head. The 390 questions and answers contained in the document concerned her severely disabled son.
Thomas Altruda, 38, has tuberous sclerosis, a rare genetic disease that affects the central nervous system and vital organs. Among his symptoms: severe developmental disabilities, motor coordination problems, autism, skin conditions, kidney cancer and seizure disorder.
Ten years ago, the state Division of Developmental Disabilities was unable to find an appropriate facility in New Jersey for his complex medical needs, which is why he has been a resident of the Brookwood Community in Brookshire, Texas, since 2005.
New Jersey, however, wants to bring him back, and the document in Betty Altruda’s hands, called the Developmental Disabilities Resource Tool, or DDRT, is meant to evaluate her son’s needs before his transfer back to New Jersey.
The Altrudas say he is flourishing in Texas. The DDD says he, along with some 470 other disabled individuals living out of state, are better off nearer their families and in community group homes. Its Return Home New Jersey program would also help the state offset expenses through federal Medicaid matching funds, according to the state auditor.
Two weeks ago, both houses of the state Legislature passed a bill imposing a moratorium on the planned transfers. (The bill is currently awaiting Gov. Chris Christie's signature or veto.)
But across the Garden State, hundreds of parents and guardians of the developmentally disabled say they are not waiting to see what Christie does but are continuing to advocate against Return Home New Jersey. They say the DDD’s plan is misguided, that it is fiscally unsound and that it is being rushed into operation. They also say it is disorganized, disingenuous and worse, potentially dangerous.
Former Gov. Richard Codey, a vocal advocate for the mentally ill and intellectually disabled, says he is “very strongly against” Return Home New Jersey, especially when the disabled are happy where they are. “Let them stay there,” he said. “This is an administration that doesn’t seem to have any heart. … It boggles the mind.”
A decade ago, New Jersey was unable to find a facility in state that would meet Altruda's complex medical needs. They sent him to Texas.
It is the economics of the Return Home New Jersey program that seems to particularly gall families. Through a federal Medicaid program called Community Care Waiver, the state is reimbursed for 50 percent of the allowable costs of disabled New Jerseyans who are returned to in-state residences.
The DDD also claims it is more expensive to pay out-of-state facilities than it is to pay group homes in New Jersey. In its annual report for the most recent fiscal year, the DDD cited an average cost of community placement in New Jersey as $120,000 per person annually. But the DDD’s contract with Brookwood in Texas puts the cost for Thomas Altruda at just $52,000 a year, said his father, Paul Altruda.
Instruments and observations
Codey says “the numbers at best are the same,” as far as in-state versus out-of-state costs. Others go further.
“The biggest lie is that this is not about the money,” said Betty Altruda, who retired recently as a professor of English at Middlesex County College. “It’s a lie when you call them (the disabled) ‘beds’ and ‘consumers,’ the way the DDD does and just so you can ask for more Medicaid money when they don’t even have the spaces (in group homes).”
The Altrudas and others also are worried that in the rush to bring back their loved ones, the DDD is not getting the full picture on the level of care needed by the most disabled and medically fragile.
On the copy of Thomas Altruda’s DDRT, the tool used to assess medical and social status, which was sent to the Altrudas last month by the DDD, there is no indication of who filled it out. (The DDD says it was a primary caregiver at the out-of-state institution.) All Betty and Paul Altruda know is that many of the answers are wrong.
Q. Does (Thomas Altruda) have any physical disabilities?
No.
Q. Has (he) been diagnosed with: Cancers or Tumors of any type …?
No.
Q. 293: Has (he) been diagnosed with: Conditions of the Nervous System, such as multiple sclerosis, organic brain syndrome, Parkinson's disease or seizures?
No.
Thomas’ DDRT was completed on Sept. 6, 2011, according to a letter from the DDD that accompanied the copy of the report. The couple found out about the existence of the DDRT through a friend, which is why they only recently requested to see it.
“The DDD has outsourced its assessments,” Betty Altruda said. “An assessment was done on Thomas three years ago without our permission, and the report was incorrect in many instances. … How are we supposed to feel about that?”
The Center for Building Knowledge, located at the New Jersey Institute of Technology, administered the DDRT on behalf of the DDD. When Deane Evans, the executive director of the Center for Building Knowledge, was asked for an interview he declined but offered to answer questions by email. When asked why parents and guardians were not consulted about the DDRT, he wrote, referring to the form as an “instrument” and Return Home NJ as “RHNJ”:
“The instrument is geared to those providing direct care. With RHNJ, consumers are living in out-of-home placements so the parents or family members are not the direct care providers.”
Altruda, left, sits at the kitchen table with his father Paul during a visit home this summer.
When the same question about the DDRT was put to Department of Human Services spokeswoman Pam Ronan, she emailed the exact same response.
After repeated requests to speak with Human Services Commissioner Jennifer Velez, Deputy Commissioner Dawn Apgar and Return Home New Jersey program director Carrie Conger, The Star-Ledger was told by Ronan and her public affairs colleague Nicole Brassoie that each of the officials was unavailable for an interview.
However, Steve Eells, the state auditor, did speak by phone. He stressed that his December 2013 analysis, showing the state could reap $20.7 million dollars in federal Medicaid money through its Return Home New Jersey program, was neither a “finding” nor a “directive,” but merely an “observation.”
“These are eligible funds not savings,” he explained, adding, “It’s actually insulting to say we would move anyone because of money. … The client and the family is always first.”
Balancing Act
Joe Young, executive director of Disability Rights New Jersey, believes the DDD could be doing a better job of managing the “mission,” but he sympathizes with the difficult balancing act the department must do in terms of the timing of transfers and the availability of the group homes.
“As a policy position, the DDD isn’t doing itself any favors by moving people back when they are comfortable in the residences where they are living now,” he said. “From a legal point of view, there’s very little we can do about it. … Really, it’s a chicken-and-egg problem. It takes so long to develop a program that it’s too much stress to tell people they’re moving before there’s a place for them yet. But if you’re ready before the people are ready to move, you’re losing money.”
The families’ frustration may be due in part to communication.
It was Thomas Altruda, for instance, not his parents, who was notified in December 2012 that he would be transferred from Texas back to New Jersey. Paul and Betty Altruda learned the news only after a call from Brookwood saying Thomas had received a letter from the DDD.
Thomas can neither read nor write.
“It’s against the law to directly communicate with Thomas because we are his legal guardians,” said Paul Altruda, who also is an attorney.
The DDD ultimately admitted the error to the Altrudas. Nonetheless, the division wants to move ahead with Return Home New Jersey, partially, they say, because by law the disabled must live in the least restrictive environment possible.
“The majority of out-of-state placements are mostly in large institutional facilities,” DDD spokeswoman Ronan wrote by email. “The majority of NJ services are in local communities. … Group homes have staffing 24/7, they provide transportation, day services and everything that the person needs to thrive, including ensuring the person receives health care.”
Homes, not institutions
But to many families of the severely disabled, the word “institution” does a disservice to the level of care they are receiving at their out-of-state facilities.
“The developmentally disabled in the out-of-state placements are not in institutions,” said North Jersey’s Phil Passantino, whose disabled step-daughter is being forced to return from a facility in Tennessee.
“They are in campus-type settings with their own group homes and roommates. The care is excellent, often with one-to-one staffing for the individual depending upon the type of activity they are in. … Medical care is readily available to them without having to be bused from one place to another. Busing is a challenging activity for a developmentally disabled person, and when they are on the bus, the supports they need are not available to them.”
A collection of photographs from Altruda's life.
Ina and Arthur Falk, 69 and 74 respectively, say the DDD’s insistence on bringing their two disabled children home, in part to be nearer their parents, is absurd. The Falks moved to South Carolina seven years ago when it became too expensive to live as retirees in the Garden State.
Their two children, Wendy, 43, and Peter, 37, both of whom use wheelchairs and are unable to speak, need 24-hour medical care. They have lived in a facility in Berwyn, Pa., since they were children.
“It just goes on and on,” Ina Falk said about the DDD’s ongoing efforts to relocate them. “They disrupt everyone’s lives. Wendy and Peter can’t talk, but they understand.”
Dan Keating, the current executive director of the Alliance for the Betterment of Citizens with Disabilities, believes closing the remaining developmental centers in New Jersey and relocating those clients to group homes should proceed, but he’s less sure about uprooting the hundreds of disabled adults who have been targeted by Return Home New Jersey.
“If the cost is equivalent and they live out of state, that’s fine with me,” he said. “If my family member was being taken care of out of state, who wouldn’t want to keep that?”
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