Remember at Election time who is getting the help during Covid-19 and who is not.

https://www.state.nj.us/humanservices/news/pressreleases/2020/approved/20200428.html

Remember at Election time who is getting the help during Covid-19 and who is not.

The key statement in this news release:  Under federal policies implementing the Families First Coronavirus Response Act, households that already receive the federal allowable maximum SNAP benefit are not eligible for supplemental payments. 

In other words, those who have very low or no incomes will not get any extra help with food.  The cost of food due to this virus is very high causing lack of lower priced items sold, lack of or limited sale of basic items like Rice, empty shelves in the supermarkets, etc.  Instead of giving an extra $100 across the board to everyone to make it even for all to afford food, the State of NJ gave “more money to people who have more money” instead. 

When you get the lower amount of Snap, it is because you have higher income (more disposable income) and often have affordable living arrangements like housing.  With all the businesses closed, these people are not spending their disposable income on having their nails and hair done, putting gas in their car, buying random items, etc.  So, they have more disposable than before.  These are the people who were given more Snap benefits. 

People who have very low or no income and who use all their low income on housing and utilities with no disposable income, got no extra Snap for food.  These are the people who are at the maximum Snap.  It doesn’t go far when food is 2 to 4 time what it was before the Virus with nothing on sale and increased prices or lack of affordable items to buy.  These people are mostly the very poverty stricken and developmentally disabled and their families.  These are the scapegoats of our backwards society.

The Courts are locked down and can not enforce court orders for support leaving many single mothers without the added support to get by with their living expenses.  Think of the people who are suffering the most during this anxiety producing time with the loss of income to pay for a roof over their head and to put food on the table for their family.

Then they wonder why we have such a high homeless population.  Even with all the Millions of dollars in donations going to food pantries, they have very little to give out to all those in need with long lines of cars that most people have never seen before because the need is so great for so many.

Our Governor in NJ Phil Murphy wants to give Illegal Aliens a $600. a week Stimulus.  Then why not give every low income taxpaying American currently working a $600. a week Stimulus too?  

Many of the currently unemployed do not want to go back to work because they are making so much money staying home collecting the riches laid out by our government that was distributed in such an unbalanced way.

The Stimulus 2020 helped some get ahead, but left many behind in the dust to fend for themselves.  This has caused a lot of anger and unrest in this Country.  We have to remember this at election time.

MOCKING THE DISABLED

I have heard many stories, of how the disabled population is mocked behind their backs.  Some of the mockers are the staff workers themselves.  Some staff, whether it’s Camp Workers, Group Home Workers, School Workers, or Aides sometimes make remarks behind the disabled person’s back.  More often then not the remark is loud enough for the disabled person to hear.

Sometimes people in public make fun of the developmentally disabled also, but we often rationalize it is because of their ignorance or immaturity.

Some of the people who make fun of the disabled do not realize that just because the person is impaired mentally, physically, or can not speak does not mean that they do not understand they are being ridiculed.

Many developmentally disabled people are very smart and some are brilliant.  Even children with Autism have feelings regardless of being said to have lack of emotions.  When you know the person being bullied, you can sense their despair over comments made. 

It may take the disabled time to digest the input, but talking about them negatively impacts the disabled person emotionally.  They often cry inside.  They have internal tears.  Some can outwardly cry, or cry to themselves at night with the sad memory of the day.

People and staff should have more consideration before making jerky remarks that they think are funny to other people or staff.  They should put themselves in the disabled person’s shoes to understand how they suffer emotionally not only with their disability, but with mockery from others.

NJCDD, ARC, and CQL SURVEY EMAIL

Be cautious with emails fro NJ Council on Developmental Disabilities.  A ‘Survey’ is offered by ARC with prospects of getting a $15.00 Amazon Gift Card geared only the disabled person to engage in the survey and done through CQL (Council of Quality and Leadership).

After starting the survey and identifying your situation, you are rejected due to limit reached on candidates applying. 

They should have let you know there was a limit to begin with instead of luring the disabled population to take the survey leading to a big disappointment.

Many of these children do not handle disappointments very well and the survey should have stated these limitations at the beginning of the survey.

If you have more than one child with disabilities in a different situation, it will not allow you continue do it either.

Shame on you NJ Council of Developmental Disabilities and ARC as the Survey is poorly presented.

TEMPERATURE CHANGES AND BEHAVIOR

Temperature changes can affect the behavior of Autistic children and adults, especially those who have more pronounced communication deficits and those that do not speak.  Medications make them more uncomfortable than the general population who do not take medications.

We have been experiencing extreme changes in weather, even on a daily basis.  It is confusing to us, so imagine those who are so dependent on others.  It helps to listen to the weather forecasts but also to observe the outside conditions yourself as the forecasts are sometimes incorrect. 

People with Autism have to be appropriately dressed.  Notice if they sweat more which can be due to overweight or certain medications.  Some who are underweight can feel colder and need to bundle up more in cold climates.  Remembering things our own mothers used to say to us, like always bring a sweater or jacket, just in case, always helps to be prepared.

Water is important for hydration, even all the new types of water on the market in which some have electrolytes.  People on medications often suffer from dry mouth.  Reminding the person to drink fluids is important because they don’t remember or they need reinforcement of what they should do.

In excessive heat, the population with Autism should spend most of their time with indoor activities that has ventilation, fans, and air conditioning.  Avoiding the sun as much as possible will help avoid their sensitive skin burning.  Always use a good sun block with at least SPF 15 as a minimum.  A hat with a visor and sun glasses will also be a safety feature. 

The sun can be strong year round, even in winter.  It may take some work or reinforcement to get this population to start using protections from the sun, but the sooner they are introduced, the better chance they will do it.

Professor Peter Singer wants Disabled People Exterminated !!!

Hard to believe this is happening in America.  A PROFESSOR who is supposed to be "EDUCATED FROM AN IVY LEAGUE COLLEGE" in this Country wants Disabled People Exterminated. This is really Hell on Earth for sure.

On  Wednesday, June 10, The NJCDD will be joining a coalition of developmental disabilities organizations at Princeton University for a demonstration speaking out against the shocking statements made by Princeton Ethics Professor Peter Singer.  

Singer, a tenured professor at the Ivy League Institution, has repeatedly been outspoken in his position that children born with significant disabilities are not worth saving, and that they can only expect to be a lifelong burden on their loved ones and on society.

If you are a person with a developmental disability, or the loved one of a person with such a disability, we’re calling on you to join us in letting Professor Singer and Princeton University know that such views are outrageous and wrong and that, no matter one’s level of disability, every life matters!

Join the Demonstration and Demand Change at Princeton University 

During this protest, we’ll demand that

·                                 Princeton call for Singer’s resignation and publicly denounce his comments   ·                                 Princeton hire a bioethicist from the disability community in a comparable position to provide a platform for views that contrast Singer’s   ·                                 Princeton create its own disability policy program to educate future leaders on an inclusive â€‹community

The protest begins at 12pm at the Princeton Train Station where participants will walk or roll the one mile to the campus holding signs and placards expressing their outrage.  Participants can also meet at Princeton University’s Palmer Square at 1pm as the group walks to the dean’s office on campus.
*The University is on an AccessLink Route

All participants are encouraged to bring hand-made signs and placards with them.  Signs cannot be attached to sticks or similar objects.

Contact ADACIL.ORG or call 732-738-4388 with any questions or to register for this event.
RSVP Deadline is Tuesday, June 9.

http://files.ctctcdn.com/b4490904401/53b0d41f-918a-4d04-9e4e-e320a019ec43.pdf?utm_source=Peter+Singer+Protest+-+June+10%2C+2015&utm_campaign=Peter+Singer+Protest+-+June+10%2C+2015&utm_medium=email

DAY PROGRAMS CAN BE DETRIMENTAL TO THE DEVELOPMENTALLY DISABLED

I just experienced a really bad situation with a non-profit Agency that my son is part of.
I resorted to writing the Governor of NJ and the Acting Commissioner.  I intend to call the Museum where the Art was to be displayed.   I also wrote Channel 12 News in hopes to help any other disabled person who is unjustly abused in this horrific fashion by a DDD funded program.

This is part of the Letter I wrote to Governor Chris Christie:

Arts Unbound really did a number on Anthony.  They took 2 pieces of his Artwork for a 3 month Show at Morris Museum.  They wanted the same 2 pieces that were in his last show at their Gallery in Orange, NJ.  They took these 2 pieces several weeks ago.  Last week the Director, Margaret Mikkelsen called me looking for the frames they were in.  I said we did not get them back in the frames.  The Director said, "They will figure it all out".   Now I get an email stating that they didn't know Anthony's Drawing Teacher used his own Frames and he doesn't have them anymore.  So, now they are NOT putting Anthony's pictures in the Morris Museum Show.  No one told us the pictures needed Frames to begin with.  

In any event, why did this Director wait until the last minute to inform us after holding the pictures so many weeks that they needed frames to be in for the show and just cancel him out without prior notice at all?   This was a very low blow to Anthony.  This Non-Profit gets a lot of Government funds to provide services to the Disabled to help these kids with their Abilities and promote them and help them reach their goals.  We're talking about up to tens of thousands of dollars per client.  So, how could they do such a horrible thing to a promising Artist?  The Frames were cheap, thin, black frames to just hold the picture to hang it.  Plus, there is supposed to be a budget for supplies.  What happened to that?   Also, they are always having fund raisers, and getting donations to increase their monetary budget.  It reaches a point that these Non-Profits become so Selfish that they become detrimental to these poor kids.  Unreal and unfair.  What a let down from the place Anthony least expected.

So, Arts Unbound gave him more Anxiety and Depression.  This is contrary to what they post on their Web Page as their Mission Statement and Goals for the Disabled.   Plus they are always promoting the "Chosen Few" to the neglect of the others.   What a waste of Tax Payer Dollars this Place is.  Especially increasing the Emotional Problems of a Disabled Child with this Outrageous Antic they just pulled on him.   My son does not deserve this.   You would do better paying for these kids to go to a real college program than wasting the Money to benefit these Greedy Non Profits who can't even put a cheap frame on a piece of Artwork for a Disabled kid to be in a Promised Show.     

Return Home New Jersey Compromise Bill is Harmful to Individuals with Disabilities Served Out-of-State

Beware of the Details:
Return Home New Jersey
Compromise Bill is Harmful to
Individuals with Disabilities
Served Out-of-State

By: Hinkle, Fingles & Prior, Attorneys at Law

Yesterday we broadcast a legislative update and action alert regarding Senate Bill 2600 based on a reported compromise between the New Jersey Legislature and the Governor regarding DDD’s Return Home New Jersey (RHNJ) Initiative.  That alert can be found at http://hinkle1.com/state-changes-course-on-return-home-new-jersey/.

Now that the full text of the compromise bill has been released to the public, and we have been able to analyze it in detail, we find several troubling provisions beyond those we discussed in yesterday's alert. 

The compromise bill, adopted as the Senate Committee Substitute for S-2600, can be found at this link.

Although this firm testified in favor of this bill as initially written and introduced in December 2014 (http://hinkle1.com/testimony-in-favor-of-s-2600/), based on the myriad of substantial changes, we no longer support this bill as amended.  The bill should be further amended or its advancement through the legislative process should cease.

A vast majority of the discussion about the compromise bill focused on adjusting the amount of time a person with a disability must be in an out-of-state placement funded by DDD in order to be “grandfathered” or exempt from DDD’s RHNJ initiative.  In short, the new bill requires a person to be served in an out-of-state facility for 25 years or 50% of his or her life, whichever is shorter.  We believe this hurdle is too high, and far too many people will fall outside these limits.

However, even if an individual falls within these limits and will otherwise enjoy the protections this compromise bill has to offer, there are several important exceptions which allow DDD to force the removal from an out-of-state placement.  Some of the more troubling exceptions include:
 

The individual does not continue to be served by the same out-of-State provider in the same location after the effective date of this act as the out-of-State provider who served the individual prior to the effective date of this act.

 

This provision can be interpreted in a couple of ways:  If a person is served at “Forest View” (a fictitious provider agency name) and she needs to move to “Hill Crest” (another fictitious provider agency) both located in the State of New York, then DDD would be able to transfer the individual back to New Jersey regardless of the appropriateness of the in-state placement.  In another example, an individual is served at the “Forest View” program, which serves individuals in “Spruce House” and “Birch House.”  The individual resides in “Spruce House,” but would be better served and should be moved to “Birch House.”  It is unclear whether, under this provision as written, DDD may be able to force a return to New Jersey because they are not in the same location.  
 

The individual or the guardian of the individual, as applicable, is not in compliance with the provisions of State regulations at N.J.A.C.10:46D-1.1 et seq., concerning contribution to care and maintenance requirements, within 90 days of the effective date of this act.

 

In our experience, DDD is often remiss in billing individuals and guardians for their contribution to care (C2C).  Sometimes DDD will go years before billing the individual for the first time.  As a result, individuals will often receive notices for back payments totaling tens of thousands of dollars.  The individual, of course, has used their social security check on an ongoing basis to provide for their other supplemental needs and the money no longer exists to give to DDD.  This provision would enable DDD to force the removal of an individual from an out-of-state placement funded by DDD as the result of DDD’s own derelict conduct.  Nothing could be more absurd.  Yet under this compromise legislation such an approach is quite possible and – based on our experience in dealing with DDD – quite likely.  
 

The primary residence of the legal guardian of the individual is not located in this State on the effective date of this act; or, in the case of co-guardianship, the primary residence of each co-guardian is not located in this State on the effective date of this act.

 

This is particularly troubling and in our opinion, completely unconstitutional.  Nevertheless, this provision will create a significant problem for families.  Let us consider this from a practical point of view:  For example, parents placed their daughter, Jessica, in a DDD funded placement at “Forest View” when she was 25 years old and the parents (who are also the legal guardians) were 50 years old.  Twenty-five years later, the parents, now 75, move to Florida.  Under this provision, DDD will be able to force Jessica back to New Jersey to the complete shock and dismay of her elderly parents and despite the trauma to Jessica.  If this scenario isn’t bad enough however, consider this:  Jessica is placed at “Forest View” at 25, her parents remain in New Jersey and then die at age 85.  They appoint their son, Robert, as successor guardian under their will.  Robert is now 50, has a spouse and 3 children, and is a successful professional living near Los Angeles, California.  Under this provision, through no fault of Jessica’s, Robert’s, or their now deceased parents’, DDD can force Jessica (who is now 60 years old and has been served at “Forest View” for 35 years) to return to New Jersey.  This is true regardless of whether the proposed placement is appropriate or whether Jessica will suffer harm in the process. 
 

The total cost of the out-of-State residential placement for the individual exceeds the cost of an in-State residential placement taking into account the funds the State would receive for the in-State placement of the individual from a federal Medicaid waiver under section 1115 or section 1915(c) of the federal Social Security Act, as applicable, as determined by a uniform assessment tool developed by the Division of Developmental Disabilities.

 

This provision is the most detrimental, as it allows DDD to move an individual who meets the 25 years or 50% of their lifetime criteria from an out-of-state placement to an in-state placement, based solely on a cost saving to the State.  For example, DDD currently funds Jessica at Forest View at a total cost to the state of $150,000.  DDD assesses Jessica using its uniform assessment tool and determines an in-state placement would require funding of $200,000 less the reimbursement rate to the State of New Jersey from the federal government.  If we use a 40% reimbursement, the cost of the in-state placement to the State of New Jersey would be $120,000, thereby allowing DDD to uproot Jessica from her home and force her to return to New Jersey – all for relatively meager cost savings.

We applaud the families and legislative leaders who have championed this fight to protect the rights of New Jersey’s most vulnerable citizens, including the most basic and fundamental right of being secure in one’s home.  Once again, we are disappointed and saddened that in the end cost considerations outweigh New Jersey’s dedication to ensure a life of dignity to its citizens with disabilities.  Therefore, this firm no longer supports this bill as amended and urges its immediate amendment or, for the good of all effected by the RHNJ initiative, this bill must not be allowed to become law.

Forward this e-newsletter to family members, friends and colleagues

With offices in New Jersey and Pennsylvania, the Attorneys of Hinkle, Fingles & Prior have years of experience
providing counsel and legal services to families of people with disabilities and seniors. The firm's attorneys
have argued many of the precedent setting cases affecting people with disabilities in New Jersey and
Pennsylvania. Click here for Attorney Biographies.

Contact the law office at 609-896-4200, 201-940-7206 or 215-860-2100.

Disclaimer: Information contained in this publication is for educational purposes
and is not a substitute for legal services.
All material © 2015 Hinkle, Fingles & Prior, P.C., Attorneys at Law.

FIRST AID FOR SEIZURES

A.S.K. AmericaSpecialKidz.org Magazine

Advocate for the Disabled shared a link.

January 9

I want to give Joanne Bastante-Howard a big Thank You for her Publication of A.S.K. America's Special Kidz (A.S.K.) which featured an article of my son, (aka) Anthony Art Agosta. It was a pleasure seeing you again and we are very grateful for all your hard work informing the public about the abilities of kids with special needs who are so gifted and talented and capable. Anyone wanting to view the informative article, please see Volume 3, Issue 8 2015 on the Website: www.AmericaSpecialKidz.org Thank you, Gina Agosta

A.S.K. America's Special Kidz

americaspecialkidz.org

Medicaid Fee For Service NJ

A new procedure is being addressed in which NJ Medicaid will limit the amount of time a parent can take a residentially placed adult child home for vacations and holidays. 

 

The rumor is 2 weeks per year.  Medicaid is now playing a major role in the CCW (Community Care Waiver) where there will be a "fee for service".  This works in most cases where parents do not take the disabled child home at all.  But, for those parents who are very interactive with their disabled adult child, it is too restrictive. 

 

The ones most seriously affected by this change are the most severely disabled population.  This change will devastate consumers who have severe medical and behavioral disabilities and will cause a hardship on their families. 

 

Many of these clients are placed very far from home and often can not tolerate a simple visit.  A visit is perceived as an opportunity to go home with the family and leaving without the disabled adult will cause tremendous emotional and behavioral problems. 

 

It is an inhumane concept and very cruel to those affected.  I hope NJ Medicaid takes this into consideration before implementing such a devastating change.

 

PLANNING FOR THE DISABLED

Planning for the disabled.  Yes, we are told to plan for our disabled child or adult child.  But, can we?  Should we?  Which type of disabilities apply?  And, when should we do it?

In my opinion, as I have reached this point raising disabled children who reached the age of majority, it is not worth the time, effort, or money to plan unless:
1)  You are exceptionally wealthy and have money to burn, or
2)  Your disabled child/adult is so disabled as to be labeled incompetent by the courts.

All in all, you would have to have enough funds to make it worth investing in a Special Needs Trust or the Administrative fees will eat the money up over time.  Community Plans also require a lot of money up front.

The problem that we are not told is how higher functioning kids that grow up with delayed development, suddenly change.  I have consulted other parents of higher functioning children who grow no different than "normal" children, just at a delayed rate.  They undergo the same personality change, just much later than their "normal" counter-parts.  This change considered 'independence' can make the person with disabilities go their separate way and not need the support anymore.  This change can come on suddenly and abruptly, taking us by surprise.

I see it as the same thing that happens with normal kids going through transition, just occurring later on with the developmentally delayed, higher functioning adult. It can shock us and make us wonder how to deal with it.  It can be a very trying experience that causes major changes in the way we think as parents.  Going through desperate means for advice becomes futile at this chaotic time.  Life can make an about face.  A portion of this disability goes through this and it is hard to determine for sure who will experience this, when, and how quickly it can happen.

In essence, they spread their wings and fly.  They show they are capable of separating without looking back. They move on with their own lives.  Whatever you taught them that is retained, carries on.  Whatever they experience after this, weather good or bad, is their own problem to contend with.  Unfortunately, that is the way the law works.  After age 18, no matter how mentally delayed they are, they become their own guardians.  Even taking Legal Guardianship has limitations on how much we can intervene, from what Disability Attorneys have told me.

We can't look into a crystal ball to know what will happen to any of us.  So, how can we realistically plan at all for the disabled?  Unless you have a severely disabled child, who needs the most help, that is the one you can be sure of what their future needs would be.

It does not pay to create a Will early on that will need constant updating and costly changes through a Lawyer.  Expect that higher functioning kids may leave the nest and not return.  They may start a new life elsewhere, at their own risk and get assistance by other means.

The bonus here is that you may have other kids or relatives that may benefit from your future planning if they show more stability and make better use of your possessions or assets.

No one ever addresses this possibility unless you talk to people who experience this.  Also, when the disabled child grows into an adult and has outside influences, this can completely transform their way of thinking.  The Internet, FaceBook, Day Programs, Work Programs, etc. all expose these high functioning kids to different lifestyles.  They may be drawn to an alternate life style and choose to try it out.

Day Programs may give 'Empowerment Classes' that go to the kid's head and they may misinterpret what the true meaning of what it really is all about.  Giving too many choices and options to these kids can make their heads spiral, unfortunately. Many of the clients in Day Programs are in Group Homes or Independent Living environments that expose the disabled kids to alternate lifestyle living.  A small population go off on their own or with what they determine to be a friend, and latch on to that life style for a while until it falters.

We do not know how higher functioning children will grow or change.  So, we can not realistically plan for their future.  It can waste years of your life dwelling over this as a parent ages.  Every situation is different, but I have found many similar occurrences happening today by talking with other parents experiencing these life changing events.  I believe that parents are so hurt by what has happened that it is hard for them to discuss it, thinking they are the only ones experiencing it, or feeling like, 'where did I go wrong'.

So, life has to happen.  We can't stop destiny.  Planning may be unrealistic in a good portion of this disabled population as the Autism rate increases and there are higher incidences of  having a higher functioning child on the Autism Spectrum.

Bonding with Family Members on the Autism Spectrum

Not all parents are bonded to their children with disabilities.  I've always tried to understand why.  I have always been exceptionally bonded to my children.  But, when the bond is broken, for whatever reason, it really hurts. 

Some parents can not accept or cope with the disability of their children.  It is such a drain on one's life.  The government rules and restrictions often make it very difficult for the natural parent to get enough help.  This is a form of punishment on a parent, so one can give up. 

Many disabled people, who are placed, do not have family visits, or have negligible visits.  I think some parents need to cut off the tie in order for their lives to go on.  Everyone has different levels of emotional tolerance.

In my case, I take my disabled son home several months out of the year.  He needs total care, so it is hard, especially when there are so many behavioral issues.  But, he craves to be with his family and I have a tight bond with him, almost on an ESP (Extrasensory Perception) level.

I do know that these disabled people, no matter how severe they are, deep down they want their family.  I've seen some Disabled Clients call out for family members in times of medical emergencies, but, no family members were at their bedside.  I felt so bad for them.  You wish you could comfort them, but, no one can replace a parent or family member. 

Severe Autism is one of the worst disabilities because it often comes with Seizures, lack of Speech and Communication, and Severe Behavior problems.  No one seems to have the time or patience for these poor people who are often very intelligent and very aware of their problem, but can not cope themselves.  Often there is a sense of fear about them, which can cause the ritualistic behavior as a coping mechanism. 

It is not an easy life for the family and when things do not go right, it can be a big emotional blow that can be devastating.  It takes a long time to heal, but with people on the Autistic Spectrum, there can be many devastating events.

Innocent Kids with Autism Tortured like Terrorists

Excerpts from ABC News article:



http://abcnews.go.com/Blotter/death-school-parents-protest-dangerous-discipline-autistic-disabled/story?id=17702216

Death at School: Parents Protest Dangerous Discipline for Autistic, Disabled Kids


Kids Hurt, Killed by Restraints at School

Students with autism, special needs are suffocated, stuffed into bags.

"... high-school student _____________ was restrained face-down on a board before being shocked 31 times using skin shock therapy at the Judge Rotenberg Center in Massachusetts after refusing to take off his coat...."

  
My View:

What is the United States of America coming to?  We are evolving into unconscionable beings with no morals or ethics.  The world is really coming to an end when we hear that people can sleep at night after getting paid for a job that tortures disabled children and adults with autism for insignificant things.

I am writing this in my own state of rage over the video I just watched on ABC News about an Autistic boy screaming into a camera from the pain of being shocked 31 times by a form of electrocution.  I find myself trying to not use the word God, as not to offend anyone who may disbelieve, but after viewing this torture, it was the most un-Godly thing I have ever seen in my life.  And then to see this boy restrained, face down, spread eagle.....I am astonished beyond what could be imagined.

How could the State of Massachusetts allow this to occur?  According to Wikipedia http://en.wikipedia.org/wiki/Massachusetts: 
"Massachusetts has played a significant historical, cultural, and commercial role in American history";   "Harvard University, founded in 1636, is the oldest institution of higher learning in the United States"; "Massachusetts has contributed many prominent politicians to national service, including members of the Adams family and of the Kennedy family.".............

So, how could such a revered State in the USA allow an Autistic child to be tortured like a terrorist?  It can't be possible.  But, seeing it with my own eyes on national TV makes my stomach turn.  This is a total disgrace to humanity.  We are evolving into emotionless Zombies who enjoy watching innocent victims suffer and scream in pain.  This is no different than stories and film clips I have see of what Hitler did to the Jewish population.  It is headed in that direction obviously.

I think the President of the United States should enact a law that prohibits the outright torture of innocent developmentally disabled children and adults with Autism or any incapacitating disability.  Something has to be enacted immediately before we lose any more innocent victims to this madness that transcends this country.

And, because I have a son with severe Autism, who has been in Institutions, Crisis Centers, and Respite facilities for short periods of time (enough time for me to recover so I can resume my care of him), I wonder what hell he endured in many of these places.  He was seriously abused in one of these facilities, but survived.  Because he can not talk, he can not tell me his plight.   Before I go to bed tonight, I will pray for all these poor victims who are so pure and innocent, and who do not deserve punishment for disability which impairs their senses and judgement to an incomprehensible degree.  I just cherish the thought that this vulnerable population will go straight to Heaven and leave many to sweat it out in their own internal Hell on earth.

"Possessed With Autism" (Poem)

Published in two books:
"My Heart, Your Soul..." Copyright 1995 and "At Day's End" Copyright 1994 

Placement Horrors for the Developmentally Disabled

Just when I thought I heard everything, I read this horrific news article:

http://www.nytimes.com/2011/06/06/nyregion/boys-death-highlights-crisis-in-homes-for-disabled.html?_r=2&pagewanted=all

I also have experienced similar nightmares with my own son who suffers from severe Autism and Crisis Behaviors, but, I was able to rescue my son from these "respite" places before it was too late.

This poor helpless population who suffer from the mental torture of Autism are put into placements where they are brutalized at the hands of ignorant, careless caretakers and former criminals. These poor victims can not even talk to express their plight.

I have witnessed this type of abuse and neglect of my own son in an out-of-state Institution and had to go through hell to pull him out after 3 horrific months of his deterioration.

This is a very extreme and complicated group of disabled people who can not control their emotions. People and Professionals do not understand Severe Autism or why they are this way. From what I have perceived of my own son with this extreme type of Autism is that they are "scared", "afraid to take one step". Their lives revolve around "perfection and order". If anything disrupts this "order", they "lose it".
They can not cope. Drugs often make them much worse.

You have to imagine what they feel. It is very complicated. All their senses are off. The way they hear, see, smell, taste and feel are distorted. They don't feel pain the way others do either. And, as they grow, they try very hard to figure out how to cope. But, almost every time, one bad habit broken turns into another bad habit...it doesn't go away.

So, how can anyone want to hurt someone suffering with the worst imaginable pain, the pain of "Severe Autism"?

Reading that so much money is put into these Institutions by the Billions and they wind up hiring anyone willing to take the job without background checks doesn't seem real. And, to stifle anyone witnessing atrocious abuse is beyond morality and ethics. This is happening in America, not a third world country.

Are we evolving backwards in time? That is what it seems. Our country is deteriorating. We are allowing the most helpless and most vulnerable population of our country to be exposed to abuse and neglect and forced to keep it quiet. The only thing we value is money and not human life. This is not the way it was meant to be.

Blame the Mother All Over Again

Recently I read an article in a disability magazine called "People and Families" blaming the (aging) mother for holding back her disabled adult son to the point where he became totally dependent on her for everything. Even her other son put a blame on her for that. This article sickened me. What provoked me to write about it was when I spoke to a disability agency and the intake worker started telling me a story about a mother who "did everything for her son....". I recognized the story and felt the need to defend this poor defenseless mother. I have not heard about "blaming the mother" since doctors in the 1950s blamed the mother for the child's Autism by rejecting her fetus.

All this mother was guilty of was loving, caring, and nurturing her special child his whole lifetime with her. She laid the foundation for him to grow. You have to remember, when you raise a child, they get used to your "mothering" them. And, in return, a mother who cares dearly for her child becomes used to the nurturing over many, many years of sacrifice.

A developmentally disabled child will grow slower than an average child. Nurturing takes a much longer time period. As the mother ages, her whole life evolved around taking care of this dependent person. The dependent child gets used to the attention. It can make the dependent lazy. But, this was not meant to cause harm; it was done out of love and caring.

Unfortunately, also what people who "point the finger" don't realize is that the government agencies do not help a parent unless there is a "crisis" or the child is placed, possibly by court intervention. Even when a parent looks for help, you come to years of "dead ends" and unless you are strong and a fighter can you carry on without a breakdown of your sanity.

Help for families is always limited as well as placements. I sympathize with the poor mother who cares and worries for their disabled child so much that they become overprotective of them. Only someone who gives birth can understand this kind of bond to their child. There are parents of "normal" children who are overprotective, but having a developmentally disabled child it tends to be more so.

Most people and professionals I have encountered can not relate to this emotion. That is why I felt for the poor mother in the magazine article. I give her so much credit. After her son was placed he quickly blossomed with the right supports in the group home. People don't realize that he succeed quickly because his mother laid the groundwork for success. So, he was a late bloomer, but it turned out positive.

Photo ID's for the Developmentally Disabled

Last month I wrote to the Assistant Commissioner of DDD-NJ to implement a Photo ID program for the Developmentally Disabled. There is no such system in place right now. I have not gotten a response.

I believe it is important for this population to have picture identification, whether it is for medical care or for a police description of the client. I do not think these disabled clients should overwhelm the DMV in NJ solely for ID purposes. It should not be a costly thing to do and can be extremely beneficial and cost efficient in the long run.

There is a new demand for patients going for medical care to produce a form of identification. The developmentally disabled population can include moderate to severe to profoundly disabled clients, and some with severe Autism, like my son, can exhibit extreme and dangerous behavior. It is not practical or safe to take them to the Motor Vehicle Office or the County Office.

Another use for the Photo ID's is to help identify the client in case they run away or they can not be found. A recent picture, with a facility or organization involvement, printed on the ID can be extremely helpful. Similar Photo ID's are now used in local schools.

This is something that should have been in place a long time ago. Even if the client can not carry the ID, a caretaker can bring it or it can be on file and used as needed.

DDD should seriously make an effort to have a program in place for the benefit of the Developmentally Disabled.

The government should create a Bill to have every DDD contracted Agency mandate a picture ID system for their clients. It can be a life saver.

UPDATE: I received a response fromt he Assistant Commissioner, who is now the former Commissioner, stating, "...it would be hard for me to justify a new expenditure of this sort when there is State-issued photo ID available through the DMV".

RESPONSE: From what I believe, most of the DDD population do not have Photo ID's. The special-ed schools and facilities I have experience with do not Photo ID the clients. This is very unfortunate.

Jury Duty and Children with Autism

Jury Duty!!! What a horror. Having 3 children with Autism Spectrum Disorder is bad enough. My son just had surgery and needs further surgery. What a time to be called for performing "my duty". My children are considered "adults" or age of majority, 18 and over, but the legal system does not take into consideration their developmental age. Do the courts understand all this?

This is the 3rd time I am called and it is so overwhelming when you have more important things that have to be done for your children. I have no time for myself whatsoever. Endless doctor visits, school meetings, behavior modification, post-school programs, and being a mother to perpetual children can be exhausting. Since I am a "Single Mother" for many, many years now, it can be very depressing. The weight of the world is on your shoulders.

I am in New Jersey and I assume because the crime is so high here now, there is a major need for continuous jurors. Many jurors are excused or disqualified, so that leaves a small pool of potential jurors. Out of desperation, they allow shoplifters and those accused of a crime, but not yet convicted, to participate, as per "NJ Court Online".

But, how on earth do I neglect my developmentally disabled children to go do my "duty"??? If parents with "normal" children have a hard time finding babysitters, lots of luck finding one qualified for Autism, Anxiety, and especially one with a seizure disorder.

There is absolutely no category for "ME" on the list of "Excuses". I send them large envelopes of information and reports to try to get excused. I write to the Judge. This time was the worst for me because it came right at the time of my son's surgery.

How can I medicate him and send him on the school van if I have to leave before him and leave him unattended?
How can I return home after him and not be there to know if my daughter, who is in her own world, let him in?
What if something happens to him during the day? I am the responsible party. Does DDD kick in?
One of my sons is placed in a group home and I am legal guardian; how do they contact me if something happens to him? He is severely disabled.
Would they interrupt the trial if something happens?

My worries are based on the fact that I have no luck whatsoever. When it rains, it pours, everything at once.....that is my luck, always has been.

Does the court understand any of this, or what?

I got excused for now, again, but for how long? Should I worry from now for next time? Too many years dealing with this makes you feel hopeless, especially because there are so many ignorant people out there regardless of their education.

It is getting very hard to live in New Jersey, especially because there is a aura of emotionlessness. There are more cold and heartless people taking over. It is very sad and very uncomfortable to comprehend it. I wish I could move out, but my kids are waiting for services here. They were born here, got sick here, and deserve what little they get.

UPDATE: Don't you know I received another Jury Duty notice just months after this last one. This time my 2nd son who is severely disabled just had a very serious gland surgery coming within a 1/4 inch of a tracheotomy in which I was devastated. How could it be such a coincidence to be called again at such a devastating time? This time I was able to get DDD to write letters about my situation and need for availability of my children as a priority.