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April Autism Aging Adults Apathy Angst

FrustratedBy Geoff Dubrowsky

April is autism awareness month, a month that I finally had decided to ignore. Since I am responsible for three adults with developmental disabilities I find that celebrating is no longer an option.  Sadly for me, my nature to not bury my head in the sand has lead me to have to write this article and not ignore the actions of April!

The month begins with April Fools' Day how appropriate! Sadly this April Fools' Day delivered us interpretations of the CDC's new autism rate. The new numbers, no matter how you want to interpret them, prove absolutely nothing.  We already knew we had a problem, that was not being given the attention it demands and we still have the wrong people pretending to help.

So rather than spend time here telling you why the Combating Autism Act has failed for over a decade, or telling you how politicians refuse to listen to parents who are looking for answers, and instead listen to those looking to enhance their 401K plans, or pointing out the fact that we may have one too many autism non-profits (these lead to more platforms where way too many high functioning self-advocates, who claim they have or had autism are telling us what our kids need)  with them aside  - I'm going to tell you about my month.

My month started with a battle to help the 75 year old parents of a 50 yr-old women who has been a resident of the Woodbridge Developmental Center for over four decades. They had been given a ten-day notice that their daughter would be moved to another NJ Developmental Center some 90 miles away.

The state law requires a 60-day Habitation Plan, that includes the families input but that law is being ignored. Because the parents lived in Old Bridge, NJ, we thought we had lucked out since I happen to be a friend of their Assemblyman Ronnie Dancer. Dancer was great reaching out as he could and also called his Districts State Senator Thompson. The story falls apart here because Thompson is in favor of closing the Developmental Centers and he decide to call me to explain his ignorance. I jumped ahead on purpose because the man was so uneducated on the issue he is championing I was left cursing him out of the phone after his responses left me shaking!

Turns out he has never visited any of the States 7 Developmental Centers that he wants to close. He claimed to be unaware that NJ has over 300 people living in Developmental Center Settings out of state and that NJ Centers do not accept placements without a court order, which is why enrollment is not up.

I must move on from this because the next call was from a group representing the 300 individuals placed out of state who where just informed they have been targeted to move back into NJ and into the Community. These are people who were either denied access into NJ’s Developmental Centers or have been kicked out of group homes and deemed unsafe to their own families.

I will be interviewing these families during the dreaded Easter Break thanks to Camp Oakhurst who have agreed to watch my child while I help these families. My efforts with these families is to fight to keep their parental rights and not accept a Grandfather clause so their kids can stay because it hurts yours. These two fights are in addition to my own efforts learning a special form of self-defense. This technique should help my wife and I when our son attacks us at least until the police arrive. You see I really felt my April was full but I was wrong, the damn phone rings again.

This time it was another warrior parent whom I have known for decades. Her son, age 21was taken by police and placed in the states last operating mental hospital,  and they had drugged him up and feel he is ok to go home, and DDD was going to allow it. Her attorney had gotten an emergency meeting but a call to me was placed because of my role on the State of NJ DD Council. I attempted to contact DDD but with the moving of people into state and closing facilities they have no idea what they are doing so I continue to get busy signals. I decide to set up a conference call with all parties, the call is placed -- however in the middle I learn my neighbors autistic son had gone missing.

With one ear on the call and another connecting the police with POAC I finally realized that I must keep fighting and if you get in my way you will regret it! I am lighting it up Red this April so do something positive or shut the hell up!

Geoffrey Dubrowsky. MBA is a member of the New Jersey Council on Developmental Disabilities, Vice President of the Board of Extreme Sports Camp for Autistic Individuals and Executive Board member of VOR.

A professional video producer, with credits including, the Republican National Convention broadcast and Dr. Stanley Greenspan's Floortime series, Geoffrey and his wife are parent of an 18-year-old boy with severe autism. Uncle and guardian of two developmentally disabled young adults on various ends of the disability spectrum.  Also, past Pres. of the New Jersey Chapter of Cure Autism Now, past vice president of and NYAC New York families of autistic children ,and past Director of Development for POAC Parents of Autistic Children.

Comments

Phyllis M.

Thank you so much for sharing.

I worry so much about my son's (autism and PANDAS) future and the lack of help for sevices and proper housing programs when my husband and I are gone.

Roger Kulp

Simply because there are not as many adults in their 40s,50s,or 60s with more serious types of autism,does not mean they don't exist.The more exposure that their stories get,the better.The fact that most of these people have been shut away in residential treatment centers since they were children,is one reason why people think everybody over the age of 25 with autism,is a Dan Akroyd,or a Temple Grandin.The autism community might be a very different one today,if more parents in the 50s,60s,and 70s fought to keep their children out of institutions like my mother did.From parents of adult children,now in their 40s and 50s,that have posted in the Autism Research Institute's Yahoo group,and elswewhere,I know there were other kids during these years,locked away in institutions,who had the same medical problems kids with autism have today there were just a lot fewer of them.

I try to do my own little part to raise awareness of this.

Unlike me,none of them will ever get a real medical workup to learn if they have anything that can be treated.

beth johnson

Here in Virginia, they are trying to close all the state hospitals, but they also have no long term alternative housing plan for not just those institutionalized patients, but the up-and-coming wave of autistic adults. Furthermore, Virginia is at the bottom of the barrel when it comes to providing state support in keeping family members at home. Waiting lists last for decades as families wait for "slots" to open up for the ID waiver. A few years ago, the hourly rate for aides was actually cut. I guess we should all be grateful that it was restored a couple of years after that- back to $8.86/hour. There was a federal lawsuit (the Feds against Virginia) about the unfair, decades-long wait lists, and until the terms of the settlement get sorted out, families can enter a lottery to compete for an extra $3000 to pay for extra help in the home. Of course, there are many families that get shut out of even that, plus the system to get that money is extremely cumbersome, even if you "win". Virginia is not a poor state, yet our services for disabled people are at the bottom of the 50 states.

Terri Lewis

I want to second Taximom5's comment. Thank you for reporting what the rest of the world should be reporting.

Martha Moyer

Texas has the most institutions of any state and I am not proud of that. An institution nearly killed my son and I am so glad I got him out of there before they did him in. There are two sides to the story. if individuals with idd and autism get too aggressive then staff don't know how to deal with them and we have seen some horrible incidents with staff getting out of hand with individuals. i believe in choice but not the choice to abuse individuals. Not all institutions do that but i tell you after what happened to my son I could never trust an institution again. Lets face it...adults with autism ARE a handful sometimes because they are big, strong and can do great damage. There are no easy answers. institutions aren't necessarily the answer either. What are we going to do when individuals get older? i think the question needs to be answered but it is going to take time. Time that i don't have as a senior citizen with a 40 year old man with violent tendencies.

Jennifer

New Jersey has the highest rate of autism. Merk is located in New Jersey. Merck makes the MMR vaccine. The MMR vaccine causes autism. Has anyone ever noticed this "coincidence"? Merck also makes the HPV vaccine. This vaccine is causing disability and deaths. Two vaccines with such a path of destruction are made by the same company? Does Senator Thompson receive campaign contributions from big pharma? Perhaps that is the real reason for his "ignorance" to the suffering of the people of his own state.

Benedetta

Thanks for telling us about this; I don't know what will happen but it will not be pretty.

Mary Ann Cannella

Thank you for speaking the ugly truth Geoff. The people who want to close the centers have the luxury of living their daily lives without the stresses and very real dangers we and our children face 24/7. That someone can judge and affect our lives without even the decency of touring EACH center is disgusting. (You know I will call and express my opinion to Senator Thompson myself) Let's start a host program for these politicians to spend a weekend at any one of our homes before they vote on the issue. That would be an experience.

Taximom5

Please keep us educated on what is going on; this is the kind of story we never hear--and we need to know.

Thank you for all you do.

Autismcomic

Thanks for all you do Geoff! Somehow we have to fix this ridiculous system here in NJ.

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