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Ne’eman’s Dangerous Agenda for Residential Housing of the Severely Disabled in New Jersey

ThumbsDown 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/

Additional video:


One relative describes the high quality services in a Developmental Center that is being closed

Sims, President of VOR describes the travesty of Assemblyman Greenwald’s bill

Robin also describes the challenges families are now facing:

State Assemblyman Bucco on Choice

Valerie Huttle on Choice

Geoff Dubrowsky holds an MBA in and is heavily vested in the autism community. He has been on numerous boards in the past, including the New Jersey chapter of Cure Autism Now, New York Families For Autistic Children, VOR and Parents of Autistic Children. As part of his professional life he was the video producer for Dr. Stanley Greenspan's Floortime Series. Geoff and his wife Rosemarie have a teen with autism who is semi verbal  as well as a  25 year old niece who is completely non-verbal. Currently, Geoff serves  on the Board of Extreme Sports Camp, the camp is an outdoor athletic adventure for kids and young adults with autism. Rosemarie, a trained CPA, serves on the Board of NAA and POAC and has been very influential in the bio-medical movement.

Comments

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Geoff Dubrowsky

T

Does not want you to know that they refuse to use the DC's so as people die and are not replaced with wait list offers the cost per resident rises and the wait list grows!

T

This article should include more information from the opposing side. For example:
- NJ's plan would leave 2 institutions open for those who need to stay in a restricted environment
- In community-based programs, practically twice as many people can be served with the same dollar while allowing for a more independent and individualized lifestyle.
- In 2007, there were 8,065 individuals on the community waiting list. It has continued to grow.
- In 2007, there were 1,005 individuals in institutions whose doctors and guardians did not oppose community placement
- Development Centers = 8% of the population that is supported by 31% of the DDD budget
- Community = 92% of the population is supported by 69% of the budget.
- The amount of spending on New Jersey’s state institutions, as compared to statewide personal income, places it 6th highest among the states, yet community spending places it in 40th place

Sue Cranmer

I made the very hard decision years ago to place my severly autistic son in a residential community. There may be some out there for whom this is an easy decision but I can't believe that number is high. For many of us parents, it is the last thing we want to do but for those of us with children severely affected, it is necessary. My son is loved and cared for. I know we all hear about the abuses that occur but how often do we hear that these people are loved and cared about by their caregivers? My son is happy and he is safe. The goal of him becoming self-sufficient is always being worked toward. Untill we put the $ into the right research and treatments, these types of facilities will be needed in growing numbers.

Geoff Dubrowsky

In reading some of the comment let me quickly confirm my position on residential choice. We need every option to be prepared for the wave of 14-17 year olds with severe autism that are in the pipeline. The kids who still walk in front of cars and who will walk off with anyone. We also need a system so that those higher functioning adults are allowed to grow without a label, and change a society ignorant to their potential.

Options include Developmental Center, Group Homes, Assisted Apartment and everything in between. Close something and you lose it forever. Having traveled across the country I have seen all type of facilities and one size does not fit all.

Someone mentioned CA and the fact is that residents that have left the Sonoma DC are either sent back or leave the system which usually means they have passed away.

When I visited there I met the shoemaker who special fits shoe's for the deformed or aging feet of the residents.

I met the wheelchair maker that custom fits wheelchairs that conform to the bodies of the resident and makes adjustment as they age.

I met the doctors and dentists who are on site and ONLY see people with disabilities.

Try to find a shoemaker for a non disabled person anymore never less one with the skills to create a shoe for a body that cannot support itself. Come ON!

Try walking into your local ER with your 14 year old child whose is 6ft tall and is biting himself who just had a seizure. You are on your own then believe me I've been there!

As far as Ari goes he has never been to a Developmental Center when questioned he said his friends at the centers told him what they were like. Well if he has people in the center who are that verbal than I agree a community setting is a better place as long as they do not have medical conditions that cannot be handled.

But it is not my call and it is not Ari's the decision belongs tp the individual, their families and guardians. Anyone else who speaks for them and in so doing creates the loss of options is a danger.

These options are not just in residential but they effect research, education and most importantly funding.

Again if the DSM 5 is expanding than options need to expand and a voice of ignorance is not helpful.

To the parents out there is this lifelong battle, God Bless You!

Jill

ND--Ari Ne'eman is a person who can only think of autism on one level-his own. He is a horrible person to be speaking for our kids and will be their downfall if he is appointed. As for Chew, it seems she sacrifices the well being of her child just to side with the ND nuts and bad mouth anything biomed or anti vaccine. She'd better wake up. Her child is far from an Ari Ne'eman and pretty soon will be so big he will completely unmanageable. Denial is the name of the game when it comes to these two idiots.

Angela Warner

This was my comment on the petition site:

"Mr. President,

I fail to understand the depths of knowledge a 22 year old college student can have in any area of life, let alone a 22 year old who is not open to the ideas of others and their families who to one extent or another have the same diagnosis of an autism spectrum disorder.

The autism epidemic and our children and families have no time for political games and anyone who has an iota of knowledge can see the writing on the wall and realize that a political game is exactly what Ari Ne'eman's nomination to the National Council on Disabilities is turning into. As the parent of four children, two who are RECOVERING from autism through bio-medical treatments and other therapies, I am highly insulted with his nomination. Ari does not speak for my children, nor does he represent them in any way as he does not have the depth of knowledge you claim he does.

It would behoove you and this great nation of ours to listen to the autism community as a whole and withdraw the nomination of Ari and nominate an individual who actually does have a depth of knowledge and one who would also be able to speak for all children and adults on the spectrum. That would require stopping the political circus, and nominating someone who actually has an open mind to autism, treatments, and adult and family supports as well.

It seems as if you are not really ready for change, and when it comes to autism, we as a community are just getting more of the same; lip-service and decisions made on behalf of a population of which you have no idea what they truly need."

End of comment. Blame it on my horrible week, say I'm back to my usual self, call me a bitch, but I am sick of the political circus they make of autism to avoid doing anything about the epidemic.

very concerned

Hi Kathryn,

People in community living are more advanced than those in institutions, but not for the reason you think. More impaired people do not qualify for community living because it offers much less support and protection. Someone who roams and has no sense of danger will not suddenly stop roaming and acquire a sense of danger if moved from a developmental center to an unlocked community living facility.

Since your child has Aspergers, you may not be aware of the spectrum of needs of the lower-functioning population and the importance of CHOICE in housing. (You did not indicate the functioning levels of the disabled people you work with.)

You commented on another AoA article in support of the UK families whose children were vaccine damaged. Ari Ne'eman claims vaccines have nothing to do with autism and he does not support these parents at all. I'm glad you came around on that issue!

Take care.

Maggie

God, PLEASE help me cure my son before these people get their hands on him.

AnaB

@Kathyrn: "stop the fear" Huh? So you having worked with people with diabilities in general qualifies you to know more about our severely Autistic kids? Have you ever had an Autistic child slip out of the house and bolt into traffic or turn up dead in a lake? There are major safety concerns for the severely Autistic that clearly you aren't fathoming if you think a community setting is appropriate for ALL with Autism. The problem with this whole proposal, from what I can see, is that it appears one size fits all...all community or all facility. We are dealing with a population whose needs vary uniquely from person to person. One-sized fits all isn't going to work.

jen

that Ne'eman guy is an idiot. If 96% of parents want the centre model of care then he should be listening. The parents always know. He's probably thinking he'll come off as a hero, though, because it looks like he's all pro integration and it may save money. Sad.

Darian (nickname)

ON a related subject, I found this on disabiltyscoop.com this morning.

Study: Regression Leads To More Severe Autism
By Michelle Diament
April 21, 2010
Children who exhibit signs of autism early on are generally better off long-term than those whose developmental skills plateau or regress, according to the largest study yet to look at regression in those on the autism spectrum.

The findings reported online this month in the Journal of Autism and Developmental Disorders come from an analysis of data provided by nearly 3,000 parents of children with autism to the Interactive Autism Network, or IAN, an online research effort. Researchers looked at factors such as the severity of a child’s diagnosis, when they achieved milestones like saying their first words and the level of educational supports a child received.

Children who regressed — or lost social, speech or cognitive skills they previously had acquired — were more likely to have severe autism and exhibit difficulty developing conversational speech. They also often needed more educational supports as compared to those who were merely slow to attain skills or whose skill level hit a plateau, researchers report.

Similarly, children whose skill level plateaued were more likely to receive a severe autism diagnosis and need more supports than children who were delayed from the start.

“Children who plateau or regress have a later manifestation of autism, but when it manifests it devastates their development,” said Paul Law, an author of the study and director of the IAN project at the Kennedy Krieger Institute.


Copyright © 2010 Disability Scoop, LLC. All Rights Reserved

Which means, even though I, Drian, am on the spectrum I can not speak for those who suffer from regressive autism. I have no idea what it is like to be that severly afflicted, or the dangers htat are posed by regression to the individual and the family, and the direct care staff. I don't pretend I can.

I am an advocate, have been for many years, inspite of my young age. But I speak for those who have Aspergers, who are like me, and focus on OUR issues, not issues of those whom I do not understand. It is my opinion that we advocates should not be sticking our nose and our muscle behind something we do not fully understand.

Or as the bible says, there is a way that seems right unto man, but the way ends in death. I take that to heart, and fight for those whom I understand. It doesn't make me heartless, it shows me understanding that I can not speak for something I have not experienced.

Saying that being Asperger's makes me be able to speak for all autistics is like saying suffering a cold makes me be able to speak to the experiences of people who have had puenomia!!

Benedetta

Geoff and Jake neither of you can ever hammer this issue enough.

Because it is a hard issue to wrap your mind around what Ne'emem is saying, or what he means, or who would care after they heard him say it. Because it makes no sense!

Well apparently the government cares what he is saying and it makes sense to them.

At the red light #16 in the small city of Somerset a person can turn left and go into the small community college or they can turn right and go into Oakwood (a state run facility for severe mental disabilities).

By the grace of God and nothing else my son and I were able to turn left, but there are plenty of people out there that have had to turn right. I know them personally or I know of them. (The principle I worked under has a sister whose son goes there) A retired nurse that turned author - books I love to read - her son goes there. And many more.

The state would love to shut it down, even before all this bad economic climate.

Way before the bad economy a young man died in that facility from choking the state pounced on the opportunity to perhaps shut it down. The newspapers had many articles every week for several years of what was to become of Oakwood, and the state constantly threatened to shut it down.

The state finally put people on trial, fired everyone and rehired a whole new staff. Perhaps they should have I do not know, the details. But can you imagine how the familys of these disabled people felt.

Is it going to shut down, and if so what will we do then with our loved one. The people working at this facility are they being abusive? Is it everybody working there???

AnaB

I wonder if Ari has ever spent any time, perhaps volunteering, in a facility where severely Autistic people are placed or is this all theoretical, ideological for him? I don't know the answer but I'd love to have one. I remember months ago, when Darian, a person with Asperger's told us of her reaction when she worked in such a place, how it altered her understanding.

ND

And to think Dr. Kristina Chew of NJ writes on her blog that she supports him. You really have to wonder what the agenda is for people like Ne'eman and Chew. Certainly it has nothing to do with the best interests of severely disabled autistic children. A piece of crap advocate and seriously misguided mother. Great reps in NJ! GAH!!

Kathryn J. Stiles Cook

I have worked in the field of serving people with disabilities for 28.5 years. The difference between someone raised in an institution vs. someone who is "home grown" is amazning!! The individual who is home grown is far more advanced. California has closed 8 developmental centers (state hospitals)We are to the point where we could fit them all from four hospitals into one. This is fantastic. People are so much happier in the community. I have seen it with my own eyes.

Stop the fear and bring the children and adults home to our communities.

enough lies

Ne'eman's lies:

"Our people have been locked away for ages in conditions that often challenge the very idea of civilization."

His description of the conditions is a lie as anyone knowledgeable about the centers will attest.

"One of the things that I find most impressive about this initiative is that it is supported by every major group in the disability community: parents, providers and people with disabilities ourselves..."

Another lie. What about VOR? And what about 96% of the parents polled who want their children to stay where they are?

"FREE OUR PEOPLE!"

He implies they're prisoners. They're not. They're well cared for. And they're not "his" people. He's just using them for his own political gain.

Teresa Conrick

Thank you Geoff, for reporting on this. One need not live in NJ to get the scope of this horrendous deal. Ignorant and politically driven people should not be making these decisions for our children.

I say "our children" because this is our future if we do not stop this inappropriate appointment of Ne'eman. He does not have the understanding, compassion, maturity and grasp of the epidemic numbers that are fast approaching adulthood. His support of this harmful idea reflects the importance of stopping his appointment as the sole representative for the autism spectrum on the National Council for Disabilities.

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