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Birnam Wood Comes to Autism Land

BirnamWith thanks to John Stone.

By Dan E. Burns

Macbeth shall never vanquished be until
Great Birnam wood to high Dunsinane Hill
Shall come against him. – Witches prophecy, Macbeth, IV.i

I asked Ruth Christ Sullivan in a radio interview, “What would you do if you had another 30 years to live?” Ruth is the eighty-plus-year-old founder of the Individuals with Disabilities Education Act (IDEA), which guarantees a free and appropriate education for our disabled kids. She said, “I would go back to Washington. And I would make residential care for our adult children a Federal entitlement, not a Medicaid waiting room.”

Great idea; thank you, Ruth. Then she passed the torch: “You do it.”

So I journeyed to Washington, DC, carrying my torch through the Rayburn House Office Building, Dunsinane, bleak and regular as an egg carton. My plan was to roam the halls, top floor to bottom, knocking on Texas Representatives’ doors. I tried to imagine myself a prophet in the corridors of power, Jonah on mission in Nineveh; but the closed doors, identical as post office boxes, reminded me more of those kids’ books where you lift the flap to see the surprise behind it.

Here’s a Texas door. “Repent!” I cried, lifting the flap. The young staffer, who was alone and had not yet opened his mail, offered me a cup of coffee.

My message was this. “In Texas, we have a wave of disabled children on the autism spectrum graduating from high school and headed for the streets. Most of them will need support all their lives. It costs $100K to $160K per year to house a disabled adult in a state institution. It costs half that to support him in a traditional group home. Through our pilot project An Independent Me, a residential and vocational center, the Autism Trust USA is modeling how that support might work to lower the cost and improve the quality of life for these young adults in a community, village, or campus setting.”

“I’m listening,” said the note-jotting staffer.

“Let’s say we get the cost down to $60K per year,” I went on. “One-third of that comes from enterprise income, because with the support of Texas Department of Assistive and Rehabilitative Services we are putting these young adults to work in micro-enterprises, self-employment, and jobs. One third comes from private pay -- trust funds, insurance, family savings, and fundraising. The last third, that’s where we’re asking for help: permanent, reliable, Federal funding for long-term residential support. Give us the tools, and we will build these communities.”

The staffer put down his pencil and said, “You know, I can sell this idea to the boss as a deficit-reduction measure.” And I thought, Yes, Yes, Hallelujah Amen!

Picking up the pace, I roamed the corridors opening doors, thirty-six of them. I found four staffers willing to engage: two Democrats and two Republicans. That’s the start of a network that can grow to make An Independent Me and hundreds of communities like it a dream come true.

My sense is that Washington can be stirred, and we must do the stirring. Representative Dan Burton recently published a call to action, HERE, for Congressional hearings into the causes of autism (including mercury and vaccines), the inadequacy of the Federal government’s response to the autism epidemic, and the failure of the Vaccine Injury Compensation Program. “The autistic children of today,” he writes, “will be the autistic adults and autistic seniors of tomorrow. Our nation is ill prepared to deal with the complex challenges posed by a generation of autistic individuals. We need prominent and influential leaders to step forward and spark a national debate on autism.”

Do you see prominent and influential leaders stepping forward? I don’t. But we can lead the way. There are more House Office Buildings to traverse, Cannon and Longworth. You too can grasp Ruth Sullivan’s torch. Within these vast and lonely halls are pigeon holes, Congressional offices as plain as a small-town library. Private chamber in the back; government-issued reception desk on right and left. Behind the desks, staffers open the mail and read the news: Autism Is Stealing Our Kids. One in 88 twelve-year olds, on top of the uncounted younger children and grandchildren swelling the ranks.

The staffers know the numbers. The reps are waking up; some are primed to listen. They have kids and grandkids too.

Cornered in his fortress, twisted by greed and ambition, innocent blood on his hands, Macbeth fights on. But once the opposition rallies, there is no doubt how the play will end.

So I would encourage you to take your issue peacefully to Washington. Vaccines; environment; housing, safety, and a job for your child with ASD as he or she heads toward the high school exit. The time is now. Birnan wood is stirring. The doors of Dunsinane conceal a secret labyrinth of high-tension power lines extending into the vast and varied reaches of America herself.

And there’s nothing between you and your representative’s staffer except an unlocked door.

Dan E. Burns, Ph.D., is the father of a 24-year-old son on the autism spectrum and the author of the award-winning Saving Ben: A Father’s Story of Autism. Dr. Burns is a Contributing Editor for Age of Autism and is Adult Issues Liaison for AutismOne. He chairs The Autism Trust USA, (www.theautismtrustusa.org), a 501(c)3 charity focused on empowering parents to organize communities where their ASD children and others can live and work, enjoy life, continue to heal, and give back to society.

 

Comments

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Dan: I can't think of any single thing that is as important right now as federal entitlement for adults, and I would not stop at residential but also include day program services/supported employment in the mix. In California, thanks to the Lanterman Act, we DO have these entitlements and adults (at least those living near larger cities) usually have a range of options. We need this same scenario occurring nationally. I salute you for carrying the torch and will support you in your federal-level mission.

Dan -

Thank you for taking such a bold initiative, and it appears you may have made some of your legislators aware of the looming disaster.

Yes, residential care should be a Federal entitlement for adults with autism. Beyond providing lifespan care , it should also stimulate more down to earth investigation of reasons for the recent horrendous increase in autism and other childhood problems.

Dadvocate and Harry Hofher, thanks also for your comments. I thought I responded to this post the other day, but can’t find it now. My son’s experience in a state hospital was far superior to that in the group home where he lives now, but the hospital was closed for the ideal of getting everyone into “the community.”

Staff in the group home earn minimum wage, and weekends relief staff take over. They do nothing. All weekend, one cigarette every hour on the hour on the back porch is the only outdoor time the residents get. I have been taking my son out Sundays for fresh air, fresh experiences, and he is working on writing his second memoir. We come home to a group of zombies sitting in front of the TV.

@Joanna Karpasea-Jones
Thank you Joanna for writing those terrific prepared letters and for your campaign against vaccinating children in secondary schools. I have messaged you on Facebook with my adaptation sent to Scottish Depute First Minister, Nicola Sturgeon, who in the past expessed some concerns about the MMR vaccine, but that was when the SNP were in opposition!!

My family has two children potentially affected by Nicola's 'catch up' vaccine campaign. My pretty teenage grandaughter is fully up to date MMR vaccinated, but I am presently attempting to persuade her mum (my elder daughter) NOT to allow her to be vaccinated with Gardasil. My youngest grandson is the sibling of our 'Wakefield Babe'; my younger daughter, parent of both boys, paid to have this child fully vaccinated with SEPARATE and spaced out measles, mumps and rubella vaccines. She is very concerned that he might be 'persuaded' to have an MMR booster at school.
Joanna's campaign letters link:-
http://vaccineriskawareness.com/Take-Vaccines-Out-of-Schools-Campaign-?r=1336084588

As an aside from a 'local'. Dunsinane Hill is being slowly, but surely, removed by a massive quarrying process. The stone chips are used for road building and repairs, including the notorious trunk road A9. This dangerous road, which has a very high accident/death rate often called 'carnage', passes through Birnam Wood. Successive Scottish governments have stubbornly refused to find the cash to fully 'dual' the road carriageways from Dunblane to Inverness; (it's partially dualled, which confuses drivers who overtake, on stretches of single carriageway, with dire consequences). It seems the witches' curse still prevails!!

Thank you to commentators for mentioning my take vaccines out of school's campaign. The way Barry summed it up is indeed why it is important to keep vaccines away from schools, so parents have a say and kids aren't bullied or forced into it. I didn't know about MMR catch up in Scotland, I will write another example letter about MMR too (in the next couple of days).

From Joanna who got an auditary processing disorder from BCG vaccine.

Great article, Dan!
It is important to advocate at the federal level. We can make a difference. Wonderful that you took the time and energy to do so and you are encouraging us all to do the same!

It is important that there should be different living options and choices offered. One size does not fit all. Hopefully the powers that be realize different options must be available.

Ah yes the prophecy of Macbeth....and there are some Bible prophecies that predict the outcome for those engaging in fraud, murder and deceit of innocents...so I predict that it will take an Act of God to overcome the power of the vaccine industry. The Bible promises that "you can be certain that the truth shall be made known"...eventually that is, but who knows how that may manifest in this regard. An army of families with autism educating thier representatives in Congress could result in Act of Congress; the first solution is to simply reverse the 1986 act that allows the vaccine industry exemption from liability. Then Changes would happen fast out of necessity for the vaccine manufacturers to protect thier financial empire. Since they obviously have no concern for their fellow man, their only motivation would be to avoid financial damages from lawsuits against them. But if that never happens, my only consolation is knowing that God has a Plan...

Dan Burns can write as creatively as Shakespeare, so perhaps he will consider writing a play about autism...that is a screenplay for a movie. Maybe he could hook up with Jenny McCarthy and Jim Carey. That way the message gets taken to the public in case the good people in congress are outnumbered by the politicians who will continue to back the vaccine industry for the benefit of all of those campaign donations.

For parents seeking employment for their adult or near-adult ASD children, you might want to read the revised Federal mandate, which has been expanded to include the most severely impacted DD adults. Google "Rehabilitation of Individuals with Autism Spectrum Disorders" and download the PDF file. For parents of tough cases like my son Ben, it's an eye-opener.

Barry says:-
"The problem really isn't "where" a vaccine is administered, it is "that" a vaccine is administered."

I disagree. When child vaccines are administered at a medical centre, the parents have a CHOICE and can choose when or even if these vaccines are administered to their child. They can also insist on full disclosure of vaccine inserts which detail any known risks or side effects. This is called informed consent.

In the UK, child vaccines are NOT mandatory, so our sneaky governments, are attempting to get round parental permissions in the case of older children, by administering HPV and other vaccines in secondary schools. Under UK laws older children can consent themselves; most teenage girls (and boys) would 'swallow' vaccine propaganda about the 'dangers' of cervical cancer, particularly if that 'propaganda' fails to inform them about the dangers associated with the Gardasil vaccine.

In Scotland, our Government has decided, 'in its wisdom' to administer a 'catch up' MMR vaccine dose to 15 year olds at the same time as administering the Gardasil. This ignorant decision on the part of our admistration leaders makes my hair curl!! There have been measles outbreaks in Europe, but NO official stats about whether or not those infected were vaccinated against measles. Government spokespersons in the UK now talk about 'fully vaccinated' -whatever that means. It sounds like an excuse to yet again blame parents and administer even more unwanted boosters!!

In the UK, thousands of young men are contracting mumps in their teens and early twenties. In many cases this has rendered them unable to father children. Some of these men were too old to receive MMR post 1988 when it was introduced, but this does NOT explain the mumps outbreaks in fully MMR vaccinated teenagers. Again, Governments blame parents for not ensuring booster MMR vaccine doses are up to date, but these sterile young men must curse the system which prevented them from contracting mumps in infancy, when it is far less serious. This betrayal of our young persons cannot be remedied by administering yet more booster doses of vaccine.

Similar things seem to be happening with pertussis, which is plainly 'getting round' the vaccine immunity, which is just not immunising children against the disease.
Governments MUST collectively rethink their immunisation strategies NOW!!

For those of you with small children, or teenagers pay all of this never a mind and live for only today.
I was told one time by a professional that even if a child was perfectly normal - no parent wants to nor should try to plan too much into the future.
That is good advice.

This is what the state of Kentucky is offering employers if they hire disabled.
Business Tax Incentives
If you own or operate a business, you should be aware of two tax incentives for hiring workers with disabilities:

•Deduction for removal of Barriers (Internal Revenue Services Code Section 190) - You may deduct expenses for making a facility or vehicle used in your business more accessible to persons with disabilities
•Accessibility Credit (Internal Revenue Services Code Section 44) - An eligible small business which pays or incurs expenses for providing access to persons with disabilities is allowed a tax credit

That is not much???!!!!!
This is more of paying an employer back for services incured from hiring someone with a disability - not an incentive to begin with.

Is this it?
Is this all the state does.
Today I went with my son for the first meeting at vocational rehabilitation since he is not good at communicating and I wanted to make sure of a few things. 1.) They help write a resume. 2.) They will do role playing and try to prepare him for interviews. 3.) To give them them a good look-over for myself
There was only one girl there and she was very young and she mainly wanted to know what the problems were with him. I also got to hear about her husband's construction company had no more jobs after a road job. Times are tough - and her boss who I think was suppose to be there and could really help with the resume was not there, so they would give my son a call and have him return back to tomorrow - 30 minute trip.

Apparently they do not communicate with the main office of State Rehabilitation - the state must be hiring out to this different company???? I am confussed about all this. But they did not know anything about him. I told them he is a man of few words, he had PDD-NOS a mild type of autism, and epilepsy, didn't have the heart to say in front of him that he also has mild tourettes, major OCD, attention defecit.
But what little I did say - we get a long explaination of - they were not allowed to tell the employer what his disabilites are - that is left up to my son to tell his employers.
.

The girl resented me being there. Tough good luck for her, - she just don't know it.

She said that there were two girls from our area that she had to go see that would require vocational training and it would pages upon pages of writing on her part.

Anything that has to do with the state or federal government could mean the death of an entire Daniel Boone National forest for paper. So get ready for someone to write and write and write and not make much difference.
Perhaps some future date a historian will go to these records and write a book on the "The 20 and 21 Century Mass Posioning of a Population, and the After Effects"

Kathy Purple Cherry;
How does that work right now, in most states.
Does states vocational rehabiltiation programs offer employers any Incentive to hire those with disabilities?

Dan - I totally agree with the concept that this must be tackled at the Federal level. I recently visited our state DDA department to discuss the concept of a private / public partnership in light of the fact that many of our kids can be viably employed, and possibly through time and repeated efforts, require less supported employment dollars. When you think about the cost of supported employement from 21 to say 65 for our children and transfer a portion of those dollars to funding a successful project that assists in developing vocational and life skills, it is apparent that it is an overall savings at the state level. The challenge is the states are mandating inclusion and see these settings as institutional. So, the pendulum has swung too far, and we need to move it back a bit at the Federal level so that the states can follow. Count me in for the next trip you make to DC. I am 30 minutes from the Capital and happy to help effect change for the future!

"... This was posted on Facebook by a vaccine safety awareness person. The campaign aims to have child vaccine administration taken out of schools and confined to medical centres. ..."

*******************

The problem really isn't "where" a vaccine is administered, it is "that" a vaccine is administered.


This autism experience has taught me a lot of things, but the most important lesson of all, is that there's no such thing as a safe vaccine.

A poison, is a poison, is a poison...no matter who decides to give it to you. Just like taking less of any poison, will never make it any less of a poison.

Dadvocate is 100% correct. We need parents of children with autism to tell the CMS that we need to keep all options open for adult housing as we enter The Autism Tsunami.

Not all adults, especially those with sensory issues will be able to live, and live safely, in an urban or suburban setting. The ideologues who advocate strictly for the urban or suburban group home setting are missing a critical point. As Dr. Rimland wrote 20 years ago, "Many group homes in the U.S. are located in places that would be better described as urban jungles than communities." Urban isn’t always better. That is why some people have always preferred to live in a less crowded environment.

Some disability advocates are trapped in an urban state of mind and don't grasp that we have come a long way from the days of Willowbrook. Parents that are advocating for alternative community options for their children are aware of the bad old days and are working hard creating community models that take into account the needs of their loved ones for a safe, secure, and nurturing environment. This is commonly referred to as evolution. Residential, employment, and community options for adults with autism need to continue the forward evolution. We need to maximize the use of all options, including the agricultural community model, to adequately care for all our kids, especially the most vulnerable among us.

As is often stated on this site, “one size doesn’t fit all”, especially in caring for our kids as they become adults. Let’s make sure all options are kept open. Whether you agree or not, please let the HHS know your feelings. We only have until June 14th

If anyone is interested in a successful, residential, employment, and community model for adults with autism they can check out www.ac-aa.org

http://vaccineriskawareness.com/Take-Vaccines-Out-of-Schools-Campaign-?r=1336084588

This was posted on Facebook by a vaccine safety awareness person. The campaign aims to have child vaccine administration taken out of schools and confined to medical centres. These pre written letters can be adapted and sent to our political representatives, with special responsibility for health issues.

I adapted one of the letters and e-mailed it to our Depute First Minister in Scotland, who also has reponsibility for health issues. A 'catch up' vaccination programme is being implemented in secondary schools, in response to recent outbreaks of measles in England and Europe. It is planned to administer MMR vaccine alongside the HPV Gardasil vaccine. As far as I am aware there have been NO safety studies researching possible adverse effects of administering this 'mix' of assorted live viruses all at the same time.

If enough of us protest, we can indeed influence those in the 'corridors of power'.

Dan -

It should be noted that Dr. Ruth Sullivan is also a co-founder of both the Autism Society of America and NARPAA, the National Association of Residential Providers for Adults with Autism (http://www.narpaa.org/). She is a terrific role model for all of us who advocate on autism related issues.

Your readers may also want to know that the definition of what is (and isn't) defined by the CMS as "community based" for the purposes of reimbursement by Medicaid HCBS waiver is yet again out for public comment (Due by June 4). It appears that the ideologues in the Dept of Health and Human Services and their allies in the disabilty advocacy circles aren't listening to the large number of people telling them that their proposed definitions are far too narrow, inflexible, defy reason, and will sharply limit the development of any campus or small footprint community for people with autism (like your proposed model). You can find these choice limiting proposals here: https://s3.amazonaws.com/public-inspection.federalregister.gov/2012-10385.pdf I strongly urge all to make their views known on this issue. Person centric planning and opportunities for independent living are certainly critical but the one size fits all proposal of scattered 4 person or less residential settings only, to the exclusion of any intentional community, flies in the face of the needs of many adults with autism spectrum disorders.

"Not every residence over 15 beds is a Willowbrook; not every group home is a utopia. We must be wary of advocates who strive to close out options which are not to their personal liking." - The late Dr. Bernard Rimland, Co-Founder ASA and ARI.

Thank you Dan for laying out a road map that many can and hopefully will pursue.

Thanks, Dan for carrying the torch. I'm trying but we need an army of torch-bearers!

"The staffer put down his pencil and said, “You know, I can sell this idea to the boss as a deficit-reduction measure.” And I thought, Yes, Yes, Hallelujah Amen!"

Dan,
You make it look easy to participate meaningfully in government and make an impact. Imagine the influence we could all have if more of us were willing to take a trip to DC (or even to our state capitol where senators and representatives also have offices). Keep up the great work - you're an inspiration!

My state representative has an excellent staffer.
I written my senator five or six times,and his staffer actually called me twice.
He was very nice.
But he did not believe me that the vaccines were the problem, but was very professional about it.
My representative had polio.
I think him having this disease would has made him blind to the problem.

Still his staffer did not ignore me, and he wrote all of it down to pass on to Mitch McConnell.

Now Hal Rogers - I have written and written,but he only answers with a form letter if at all. I pass his - well I am not sure what it is??? His regional building ever once in a while, I wonder what is in there?

I am going today with my son to a place the state has hired to help my son with his resume, and practice interviews and I will be passing Hal Rogers place. But I don't know if it is right to have my son with me.

Coming up new politician is at this moment - a recently retired admiral that has moved back home. He even said he wanted to start a more intense vocational school

WS-Thanks-My School Shakespeare was a long time ago!! Incidently, theatrical companies always call this 'The Scottish Play' because of the superstition associated with the name 'Macbeth, widely believed to carry a curse!!

Great article, Dan! I was wowed by your comments on Ruth Christ Sullivan.

I would also encourage Washington to permit more flexibility on how funding is used for the population with ASD. ASD wasn't even on the table when disability advocates worked with the federal government to create guidelines. It certainly makes sense that a physically disabled person may do best in an individual apartment or in a group home with 2 or 3 other people. But that model can be isolating for a person with ASD, and it certainly doesn't provide adequate safeguards for a person with ASD who is known to wander. A better model would be senior living - some seniors live in their own homes, some live in independent apartments, some live in assisted living. THEY choose what is right for them. And the government doesn't come along and say it is discriminatory for people to voluntarily choose to live together, or put roadblocks in the way of anyone trying to create such alternative housing.

Jenny

Macduff's "chickens".

The ghost of the murdered Banquo at the feast lives on, along with all his 'little (slaughtered children) chickens'. Dunsinane Hill is one of my favourite geological 'stamping grounds', but the oppressive atmosphere of battles past remains.

Macbeth's murdering misdeeds ultimately destroyed him, as the present day political and corporate betrayal of our world's children will ultimately destroy those culpable perpetrators.

To quote the Scottish play:

'Finger of birth strangled babe
Ditch delivered by a drab,
Make the gruel thick and slab.
Add thereto a tiger's chawdron
For the ingredients of our cawdron.
Double, double, toil and trouble,
Fire burn and cauldron bubble.'

It took four hundred years of social evolution before doctors started to use human fetal tissue in medication.

BTW, for those unfamiliar with 'the Scottish play' this explains its reputation:

http://www.youtube.com/watch?v=SpsOkvZ4XMM

Dan and I have been recently discussing the "Scottish play". In this context it might be worth remarking that although the pivotal action of the play is the murder of an elderly king, it is also liberally laced with imagery of murdered infants and children.

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