We have published a number of posts explaining why we do not support Ari Ne'e,eman, a young adult with Asperger's Syndrome, as the sole representative for the autism spectrum on the National Council for Disabilities. (Autism Action Network Requests Clarification from Ari Ne'eman on Views for Nat'l Council on Disability and Many in Autism Community Opposed Ari Ne'eman On National Council on Disability and Keeping Autism Neurodiversity Out of the White House)
We continue to state that Mr. Ne'eman does not appear to be willing or able to advocate for those individuals on the lower functioning end of the spectrum and for those whose families seek treatment oriented medical care for their loved ones. To sign and circulate the petition opposing Ari Ne’eman for the National Council on Disabilities, click HERE.
By Geoff Dubrowsky
Ari Ne’eman, Yes-Man to the Assemblyman
I must apologize for not hammering home what and who Ari Ne'eman is and how much of a danger he is to our kids before now. I have seen this coming for over a year but had hoped that my pleas of support to Autism Speaks and various autism service providers would not continually be ignored.
What Ne'eman he is doing in New Jersey is just the tip of the iceberg if we let him in any way influence DC. Please act now and stop people who believe they speak for our children just because they can't.
It’s quite an indictment of Ari Ne’eman that his nomination to the National Council on Disability is opposed by VOR - an organization which for 25 years has represented individuals with mental disabilities, their families and guardians. Ne’eman’s agenda for residential housing of the severely and profoundly disabled in his home state of New Jersey does not represent the best interests of this very fragile population. Not by a long shot. His nomination is currently on hold, but if it’s confirmed, he could influence how mentally disabled people are cared for throughout the country.
Ne’eman has openly supported New Jersey Assemblyman Greenwald’s proposal to close most of New Jersey’s seven Developmental Centers which house 2,819 people with disabilities including autism. These intermediate care facilities (ICF’s) house persons with mental retardation as an option under the State Medicaid Plan. Greenwald wants to move this population into community living facilities regardless of their needs and without consulting parents and guardians. The Advocates for New Jersey Developmental Centers sent a survey to parents and guardians of those potentially affected. Of the 1417 who responded, 96% wanted their disabled loved ones to continue receiving services in the centers that Greenwald and Ne’eman want closed. Only 4% favored community placements.
Forcing individuals into community placements would not only be traumatic to those with autism who have difficulty with transitions, it could be dangerous. Front doors on community living centers are not locked. Supervision is not as great and possible proximity to highways and busy streets could spell disaster. Furthermore, medical care is not on premises. Community living is not appropriate for every member of the population currently being housed in Developmental Centers, but this fact has been disregarded by Greenwald and his yes-man, Ne’eman.
Ari Ne’eman, self-proclaimed crusader for civil rights, does not seem to have noticed the rights violations he has endorsed. According to one advocate, the Olmstead initiative clearly states that the primary decision-maker regarding relocation must want the patient to move out of a center. But in New Jersey, the decision-makers no longer have a voice in this all-important decision. Furthermore, New Jersey is in deep financial trouble, and moving patients back into the community would be prohibitively expensive for the state. Community placement can be expensive for families too. The federal government matches 50% of care costs in developmental centers; in the community, many of the necessary expenses, including room and board, are not covered under Medicaid's community care waiver.
The Report on Residential Choice Survey also points to the serious ethical improprieties involved. “…during the past several years, the New Jersey Division of Developmental Disabilities instructed its treatment teams to state that all current residents of developmental centers can live in community settings, thereby denying residents of the state run ICF/MR’s their right to individualized treatment planning. As a result of this memo, the Division then stated ‘There are 2,457 individuals who have a recommendation for Community Placement in their IHP.’ These statements give the misleading impression that community placement is an appropriate option for all residents of New Jersey’s developmental centers. However, the Division has never surveyed parents, family members and guardians regarding their preferences for services and [has] disregarded the recommendations of those who directly provide for the care and treatment of those individuals.”
The report further stated that “the conduct of the Division of Developmental Disabilities in requiring treatment professionals to recommend community living violates the requirement for individualized treatment planning; and the use of state employees in the Bureau of Guardianship Services as ‘advocates’ for persons receiving ICF/MR services is a conflict of interest and should be suspended immediately…. these recommendations do not consider the wishes of the individuals’ family as the primary decision-maker. This practice jeopardizes federal financial participation and should be suspended.”
The dishonest actions of the state of New Jersey should be challenged by a disabilities advocate, not supported. Furthermore, Ne’eman’s apparent denial of the autism epidemic is now a true liability; if he doesn’t perceive the increase in autism to be real, he won’t see the ever greater need for the Developmental Centers in the future.
Enormous waiting lists already exist for the community living placements. According to the ANJDC, “during the past 10 years, the number of persons receiving ICF/MR [Developmental Center] services in New Jersey has decreased by about 1,000. At the same time, however, the Division did not make any significant headway in addressing the lengthy waiting list for waiver services among persons with developmental disabilities living in the community. During the same period, the waiting list has grown to more than 5,000 persons.”
The proposed closing of the centers is not a financially sound decision. According to the report, “The current proposals to move all developmental center residents into the community do not take into account the actual level of services required for each individual. This in turn represents a challenge to policy makers and state government because they cannot adequately determine the level of financial support required to provide an appropriate level of funding for New Jersey ICF/MRs nor to those who will be moved when federal transition dollars disappear under the Money Follows the Person. MFP dollars are federal dollars that increase an individual’s budget for 12 months after leaving and ICF/MR. The Center for Medicare and Medicaid (CMS) requires the states assurance that those dollars will be available through state resources when the federal dollars expire.” It’s unlikely that Ne’eman, a college student, has a thorough understanding of the complex laws governing funding for the care of people with disabilities.
ANJDC’s conclusion gives us a look at what the future may hold for all 50 states, without strong advocacy for our neediest citizens:
“The Division has promoted the myth that more than 2,400 residents can move to the community … the wishes of the primary decision makers have been systemically ignored. The truth is that by an overwhelming majority, parents and representatives of those who live in our NJ Developmental Centers are happy with the care and life provided for their loved ones and that choice should be respected and preserved. We also hope that an informed public will lead to an opening of doors to our centers. We watched as many of the center residents without family guardians were being moved out of the centers. Many did not fare well and came back to the centers or transferred to nursing homes. Clients that returned to the centers they came from often returned due to deteriorated health conditions and complications. The Division has declined to release the number of those who left the centers, were moved from group home to group home, sometimes to nursing homes and even sent back to a Developmental Center although often not the one they came from. This information along with a 10 year anniversary look at the number of deaths that have occurred since the closure of North Princeton Developmental Center are necessary to understand the fact that one size will not fit all in terms of placement and level of service.
For the last few years the Division of Developmental Disabilities has hired an outside agency to come into the centers and look for candidates for movement into the community. They are moving people out with big budgets under FMAP short term funding that will not last after the first 12 months. The people leaving now are more disabled than those who left in previous years when they were determined to no longer need the ICF/MR level of care. These recent clients had extensive needs that the community was not and still is not prepared for.
Families once again tried to get someone to listen. Instead a NJ Assemblyman Louis Greenwald came up with a plan to close the homes where our children live. At his press conference he had no one with him representing any of the Parent/Family Groups from the Centers. He had at the time of his press conference never even visited a Developmental Center!”
Ari Ne’eman stands in support of Greenwald’s proposed closures and the dishonest means to implement this agenda. And now, Greenwald’s yes-man wants to be on the National Council on Disability. Call or write your U.S. senators and request they vote “No” for Ne’eman.
To sign and circulate the petition opposing Ari Ne’eman for the National Council on Disabilities, go to http://www.ipetitions.com/petition/opposeari/