Archive for the ‘Recommended Books + Videos’ Category

This is Video Week.

So far we’ve seen:

The Values of Inclusion: From Down Under
By Heather Simmons at the Institute of Inclusion in Sydney Australia.

More than just a Graduation Speech
By Jeremy Sicle-Kira, a young man with the label of autism who uses an augmented communication system.

Today’s Feature for all you country music fans is from the Ohio Chapter of People First and was shown during the Rehabilitation Services Commission (RSC) Conference in 2012.

I loved this video, the message, the music, the participation, the fact that the People First group made the video and presented it to the “professionals”–I mean, who is teaching who?

Thoughts on Jobs and the Role of Government

Every day I watch my son, Aaron who has the label of autism, as he sits and loses skills he had in high school. We still have the dream plan, we still have the hope, but we need help to make it happen.

Why is that?

I know it is very popular to bash the government. “Not a government plan”, right? But is that what we really want?

The model programs, grants, initiatives for work, and job coaches of ten years ago are gone-zap.

New RSC priorities and guidelines, cutbacks and more cutbacks on funds have dried up and forced us back to depending on the charity, kindness and pity of others.

It’s NOT a matter of not knowing what to do

We know how to support people in the workplace. It is difficult surely, but we know how to get people jobs.

Special Education and Rehabilitation Services has decades of research and model projects. Marc Gold, Lou Brown and hundreds of skilled teachers and professionals have shown us the direction and specific skills we need to get jobs.

Unfortunately, because there is no mandate for adult services (like public laws which require children to go to school), there are also no requirements for adult day programs. No certification for the people in charge (GED prefered instead of licensed teachers), no functional or community based curriculum, no related services like speech, physical or occupational therapists. Adults are on their own. And there is no due process rights for parents/guardians to hold people accountable. We are told to find another program if we are unhappy.

So, what are our alternatives?

We have to keep believing. Keep telling others about the vision of a job, or if not paid, then meaningful work/volunteer experiences.

Our young people have to remind us not to give up. They have to keep in our face singing, shouting and even misbehaving.

Certainly we need the government. And we need those government plans to be more than just pieces of paper–we need them to support each individual so they can at least partially participate in having a job.

Comments: Any thoughts on “I need a job?” Any other videos you want to recommend to our community?

Keep Climbing: Onward and Upward

All my best, Mary

Related Posts

Functional Curriculum| Use it or Lose it

Busy vs. Bored Life

Remember this video:

Better than Church I still love this one, don’t you want to just sing along?

The Values of Inclusion: Valuable across the World

Jack Pearpoint is a true visionary. He shares his vision with others. I recommend subscribing to his Inclusion Network YouTube Videos (link below the video).

At the Down-Under Inclusion Institute, Jack showcases Heather Simmons from his recent trip to Sydney, Australia in May, 2012. “Heather summarized the simplicity and complexity of living an inclusive life in a welcoming society.” Enjoy. Isn’t it nice to know the ideas of inclusion are spreading around the world.

There is a content organizer below if you want to print it out and take notes.

Find more videos like this on Inclusion Network

Study Guide or Content Organizer: Print out and take notes while watching video.

The Values of Inclusion by Heather Simmons

Everyone is born “in”

All means “All”

Everyone needs to be “in”

Everyone needs to be

Everyone is ready

Everyone needs support

Everyone can learn

Everyone can contribute

Everyone can communicate

Together we are better

Additional Notes:

Any questions? Comment? Anything you would like to share about this video or others?

Keep Climbing: Onward and Upward
All my Best,

Mary

Tale of Two Brothers: Sibs of People with Disabilities

It was the best of times and the worst of times. (Sorry, couldn’t resist.)

All boys and girls grow up into adults. If the statistics are correct that one in 88 children now have the label of autism–that’s a lot of brothers and sisters.

The cute little brothers on the hiking trail grow into … what?

Can the brothers and sisters of people with disabilities, including autism, stay close and involved in their sibling’s life? How does it change over time? Can anyone have a “normal” life?

When we first suspected something was wrong with Aaron we went to the neurologist and began tests. We told him we were thinking of having a second child and he said, “Great, Aaron would love to have a brother or sister.” The tests took 6 months and fortunately for us, we were already pregnant when the neurologist told us Aaron would, “always be in special schools.” (which was his way of saying Aaron had cerebral palsy and was severely retarded–though we didn’t know what he meant.) Tommy is 18 months younger than Aaron who later added autism to his list of neurological labels.

I can’t imagine our lives without Tommy. I think God knew our family needed him to help us get through the rough spots. He is a very thoughtful quiet guy, who is one of the most caring people on the planet. He is also a terrific problem solver and continues to be such a source of joy and support to Aaron and all of us.

In this picture (Aaron 10 yrs) and Tommy (10 yrs) pose on one of the hiking trails in the Great Smoky Mountains. Sometimes our whole family would go on the hikes, sometimes Tommy and his dad, Tom, would go and spend a couple nights on the trail while Aaron and I stayed in the basecamp.

Thankfully Aaron let me use him for an excuse so I wouldn’t have to hike 10 miles up the mountain, sleep on the ground worrying about bears, and shovel the … you know. Sometimes it was just Aaron and me roughing it in the camper with running water and toilets that flushed. Sometimes my dad or sister Janet joined us at basecamp. It was always a great family adventure (click here).

Tommy has always been involved in Aaron’s life. Until he went to college, they went to school together and were involved in some extra curricular activities together. He certainly had his own friends and activities, but Aaron was involved in his life if it was cheering at his baseball games, watching him play video games or build stereo speakers….

In the last several years Tommy’s job, as a radio frequency engineer, has taken him to South Carolina, North Carolina, Pennsylvania, Virginia and D.C. (Did I mention he was in charge of setting up the cell phone operations for Nascar and the Super Bowl?)

He recently moved his family back to Cincinnati and is now living between Aaron’s house and our house so we get to see his family almost every week.

Because Tommy has grown up with Aaron, he knows what Aaron likes and dislikes–sometimes even better than mom.

Tommy invited us all to his house yesterday and his wife Ana fixed an amazing dinner. Isabella (1 year) was climbing on Aaron and making him laugh.

Dignity of Risk

Tommy is now an adult who understands the “dignity of risk” (click here) and lets Aaron share his life with his family. Notice that while Aaron is pushing Isabella in the stroller, Tommy is hiding in the bushes making sure everything is okay.

Aaron can independently push Isabella and talk to her (why she was looking at him). He is using his skills. But Tommy is close by. Isabella enjoys her ride with Uncle Aaron and is safe.

I could not have planned for this special moment. I did not have a lesson plan or task analysis. Tommy just figured it out.

What a great brother.

LIFE IS GOOD!

I want to share two stories about brothers and sisters of people with disabilities that have been in the news.

Sister “Deebah” makes a video about her brother

The first video is by Brooke May, a young girl who has a brother Jonathan, with the label of Down syndrome. Let me know your thoughts in the comments, but I see a loving relationship and a sister who reminds me of Tommy.

Time magazine article by Noah’s Brother

The second story is an article in Time by the author of Boy Alone: A brother’s memoir (Harper). It is written by Karl Taro Greenfeld who’s father wrote the famous book, A Child Called Noah. It is fascinating to follow this family’s journey into the second generation and the adult world. This article points out some of Noah’s history and does not have the miracle ending we all wish. It suggests the way to survive is to live in the present. It also hints at some of the experiences the author experienced in the past and now in his role as advocate and caregiver for his brother. It is a sober message. Again, please share your comments below.

I love the title! “Growing Old with Autism” (click here)

Another Quote:

I remember reading an article where one brother of a person with a severe disability said, “Growing up was like being an only child, with a brother.” When I asked Tommy about this, he was very thoughtful and just nodded.

Comments Welcome

What do you think? Do you have any stories about brothers and sisters?

Keep Climbing–Onward and Upward

All the Best,

Mary

BOB WILLIAMS

Bob Williams is currently the Special Assistant to the Director of the D.C. Department on Disability Services.

Bob served in the Clinton Administration as Deputy Assistant Secretary for Disability, Aging and Longterm Policy at the U.S. Dept of Health and Human Services, Washington, D.C.

I bet Bob had to program that title into an automatic response button on his augmented communication device *smile*. It would take way too long to say, much less spell out letter by letter.

Because Bob has cerebral palsy and doesn’t speak with words, he knows the importance of augmented and alternative communication.

He wrote the TASH resolution on “The Right to Communicate” (click here).

“What if???”

I first met Bob Williams when we were both serving on the TASH Board of Directors. At first, he seems shy but don’t be fooled–his power is in his message.

Below is a poem he wrote when Facilitated Communication first opened the communication door for many people with autism, including Aaron.

What if???

What if
autism is a mistake?

Someone else’s
mistake?

Ours;
not theirs.

What if
autism really is…

Flawed communication?

More ours
than theirs.

What if
the Truth

Suddenly all came
gushing out

LIke vinegar spray
or electric shock
from a Sibis*?

What if
they started handing out Nobels

For humanity’s
inhumanity?

Who do you think
would win more?

Us or them?

What if
autism is a mistake?

Someone else’s
mistake.

Bob Williams

(*The Sibis helmet gives electric shocks to force compliance.)

If you have any doubt about the power of communication, check out Bob Williams as he talks about the ADA and “presumed competence.” In (about) minute 4 of the video he talks about the need for technology to assist in communication.

Health and Disability

Here is a speech Bob gave on Health and Disability (click here).

Linchpin

Bob would be what Seth Godin calls a “linchpin.” He is remarkable and “pokes the box.” He has influenced the President of the United States; laws like ADA, IDEA and the technology act; national policy; parents, self-advocates and everyone he meets. The world is a better place because of Bob Williams.

Keep Climbing: Onward and Upward
All my best,

Mary

Comment:

Did you feel the passion and power of the poem? Any other “What ifs???” in your life? What did you think as you watched the Bob Williams video? Did this make you want to try just a little harder to communicate with people who don’t talk with words?

Related Post: The Right to Communicate| Wretches and Jabberers

Do You Hear What I Hear?

Do You See What I See?

In 1962, the song Do You Hear What I Hear? became an instant success when its lyrics asked us to hear, see, listen and “Pray for Peace, People Everywhere.” 1962 was a time of fear and uncertainty–much like 2011.

Today, as the year is coming to an end, I invite you to journey virtually to the Middle East–to the land of shepherds and millions of stars Listen and See this new version of a holiday classic.

‘Tis a Season of Magic

Blake Roberts and Pastor Snoopy Botten are musicians and visual artists who have collaborated on many CDs. Both are artists who inspire us to reach for the stars.

Their magic is their vision, talent and… a speech synthesizer with DECtalk software which helps people who can’t sing with words–sing with tech. Those who can’t see–paint with tech.

The result is poetry in motion.

Enjoy!

Do You Hear What I Hear? |Music and Visual Art

http://pastorsnoopi.twigs76.com/songs/DO YOU HEAR WHAT I HEAR.mp3

In Blake’s Words:

Dectalk is a speech synthesizer that can be programmed to sing. I like Dectalk because I enjoy making it sing. Additionally, an almost infinite number of voices can be created with it.

Snoopi is a good friend of mine whom I met on the Internet several years ago. We enjoy working together on the CDs Snoopi has produced over the past couple of years. I did all the DECtalk programming and Snoopi mixed my DECtalk file with the karoake track.

My friend Snoopi is the same Snoopi you know on Facebook.

Snoopi programs Dectalk because it lets people who can’t talk sing like everyone else. I program Dectalk because I enjoy it.

I program songs at the same level of excellence as Snoopi. In fact, I am slightly better in some areas. Snoopi is the best Dectalkist in the world, I am second best. We never intended to be first and second best, we just are.

In summary, programming Dectalk is my favorite thing to do. Blake

More information about Blake and Snoopi:

Click here for http://pastorsnoopi.twigs76.com/”> for an article about this unique team.

If you would like to contact Blake Roberts go to: beroberts@hughes.net

If you would like to contact Snoopi Botten go to: http://www.dectalksings.com/ or email Snoopi at dectalk@aol.com.

The video below is about Snoopi. Imagine, he sang the National Anthem for a professional baseball game. Don’t you love his confidence and spirit? His goal is to get a Grammy–and I think he will.

Keep Climbing and Singing: Onward and Upward
All my best,

Mary

What do you hear? See? Think? Want to discuss?

What did you think of Blake and Snoopi’s version of “Do you hear what I hear?” Do you know anything about DECtalk? or other programs to help people with disabilities talk/sing/dance/make beautiful art? I was struck how their work makes me listen and see differently, how it helps me see “goodness and light.” What about you? Do you know anyone who might also be interested in collaborating with Snoopi or Blake? Does their can-do spirit remind you of Aimee Mullins?

Bob Perske is a pioneer, a storyteller and a “Group Man.”

In his book, Circle of Friends, he tells the story of vulnerable people building circles of support.

Bob wrote the following speech to bring together Joe’s Circle of Friends who, even though they couldn’t stop his execution, used citizen advocacy like a jazz band, and blended their talents to prove Joe’s innocence 19 years later.

Bob ends with lessons learned and suggests action steps so Joe Arridy’s life and death will not be forgotten. Perhaps he couldn’t stop the injustice of his execution, but now there is a legacy which can help others.

It is my honor to share Bob’s words:

REFLECTIONS ON THE GROUP THAT FOUGHT FOR JOE ARRIDY

Written by Robert Perske but Voiced by Attorney Anne Treimanis
Pioneer Museum, Colorado Springs, Colorado, May 18, 2011

The Circle of Life:

Fifty-three years ago, I befriended a teenager who worked in a mission hospital in Espanola, New Mexico. His name was Richard Voorhees. He worked a morning shift in the hospital’s kitchen, went to high school and returned for an evening shift.

We got together a lot. He saw me as a mentor. Later, the mentorship was reversed when Richard Voorhees went on to become a skilled professor of sociology and anthropology.

That’s why, in 1992, while doing research in Greenwich Village, New York, Voorhees discovered a poem in an out-of-print book. He sent it to me and said, “I’ll bet this grabs you.” The poem described a warden “who wept” as he watched a death row inmate playing with a toy train on the floor of his cell.

For more information on Joe Arridy

On another occasion, Voorhees taught me how to feel a deep respect for trumpet player, Miles Davis. Davis was uncanny when he played in combos with other great musicians. Davis never played solos. He said, “I play what WE can play; NOT ME. I never play what I can play. I am a “group man.”

I THINK MILES DAVIS WOULD HAVE BEEN MOVED BY THE WAY OUR GROUP HANDED OFF TO EACH OTHER THE SAD MELODY OF JOE’S LIFE.

The Sad Melody of Joe’s Life:

• The poem about the warden who wept was sent to Watt Espy, the archivist at the Capital Punishment Project, in Headland, Alabama.

• Espy researched and connected the poem to the execution of Joe Arridy. He sent a packet of news clippings and detective magazines on the case.

• News reporters and history archivists up and down the slopes of the Rocky Mountains helped with the search.

• A book about Joe Arridy’s life and death was published.

• Pete Strescino, a reporter for The Pueblo Chieftain wrote a review of the book.

• Screen writer Dan Leonetti read the review and the book — and then wrote a screen play called “The Woodpecker Waltz.”

• A California film producer named Micheline Keller read the screen play and shed tears like the warden did.

• Teddi Roberts, the executive director of The Arc of the Pikes Peak Region and the members of her group offered a home base for many who worked on Joe’s case.

• Arc Street Worker, Craig Severa, became Joe’s “foot man,” “bag man” and “on-the-street cheerleader.”

• Attorney Anne Treimanis created a website www.friendsofJoeArridy.com. She did it at her own expense and filled it with every pertinent fact she could find on the case.

• The Arc organized a fund raiser to pay for a dignified tombstone that replaced that awful rusty motorcycle license plate marker on Joe’s grave.

• The Arc gathered 50 of The Friends together for a tombstone dedication ceremony at Joe’s grave.

• Mike Radelet, one of the nation’s leading spokesmen for stopping death penalties came to the ceremony.

• Photographer Antonio Sanchez created a montage of photographs of the group in action.

• Antonio Sanchez and Dan Leonetti talked Denver Attorney Dave Martinez into attending the tombstone ceremony with them.

• Attorney Martinez became interested in the case.

• Then all of the Arridy files were transported to his office in Denver.

• Attorney Martinez worked off and on with all of us for the next three years before writing a petition to Governor Bill Ritter, Jr.

• Terri Bradt, the granddaughter of Attorney Gail Ireland, heard about The Friends and she joined them. Then she wrote a book about how her grandpa rose up and fought like a tiger to save Joe’s life. She described how Ireland managed to get at least six stays before Governor Teller Ammons called the prison warden and ordered Joe to be killed within the next few minutes.

• Lisa Cisneros, Director of the Colorado Alternatives to the Death Penalty (CADP) offered her organization’s support.

• A heart touching song entitled “The Woodpecker Waltz” was written by “Identity Traveler Tom Garcia.

• A lovely, tender-voiced singer named “Molly” keeps the tears flowing when she sings Garcia’s song.

• Attorney Annie Treimanis recorded the song for all to hear by placing it in Joe’s website.

THEN CAME A SCARY DAY

• On October 27, 2010, Attorney Martinez delivered a 523-page “Pardon Application for Joe Arridy to the Governor of Colorado.”

• It contained:
– The Petition and Footnotes (41 pages)
– The Legal Memo (11 pages)
– Exhibits (173 pages).
– Affidavits in Support of the Petition (88 pages)
– Letters of Reference in Support of the Petition (210 pages)

THEN CAME THE GOVERNOR BILL RITTER’S ANSWER

• On January 7, 2011 — exactly 72 years to the day when newspapers announced Joe Arridy’s death — Governor Bill Ritter, Jr. issued a posthumous pardon.

THE GOVERNOR DID NOT STOP THERE

• He went beyond the expected by writing an in-depth three-page press release that went to newspapers and electronic media up and down the state. In it he explained in rich detail why he issued the pardon.

AFTER THE PARDON WAS ISSUED, OUR GROUP EXPANDED

• We were pleasantly surprised when relatives of Joe suddenly came out of the darkness and celebrated in public with us.

THEN CAME ANOTHER SURPRISE!

• We learned that Maria Tucker, a member of the Arridy family was employed as The Special Collections Manager for the Pueblo Public Library.

• Immediately, Dave and the group arranged for the transfer of the Arridy files to Maria who is now archiving them in the Western History Division of the Pueblo Public Library.

I AM AMAZED BY ALL THE SOLID PRODUCTS THAT HAVE BEEN PRODUCED THAT WILL NOT GO AWAY.

• There is a book about Joe Arridy’s life and fate.

• There is a book about Gail Ireland’s legal fight to save Joe’s life.

• There is “The Woodpecker Waltz,” Dan Leonetti’s heart touching filmscript.

• There is the website.

• There are hundreds of facts about Joe Arridy now being sent into cyberspace for the whole world to read and ponder forever.

• There is Dave Martinez’s petition for Joe Arridy’s pardon and the Governor’s response now filed in the vaults of the Colorado State Archives.

• All files on the case have been archived in the Western History Department of the Pueblo Library.

NOW COMES ONE MORE ROCK-SOLID PRODUCT!

• Five new words have been chiseled deeply into the face of Joe’s new tombstone. (See picture above.) They say:

“HERE LIES AN INNOCENT MAN”

• (Craig Severa will probably go to jail for adding them without asking permission from government officials who rule on such things.)

• Tomorrow all of us will go in a caravan to Woodpecker Hill to dedicate it.

IT TOOK 19 YEARS OF STRUGGLE
BEFORE WE COULD PUT THOSE WORDS ON JOE’S TOMBSTONE!

NOW, I SAY LET’S GO FOR ANOTHER 19 YEARS!

• Let’s apply what we learned on other heartbreaking miscarriages of justice.

• By the end of this next segment, I will be 103.

• So let’s get going!

• Here are five issues I would like to see us tackle.

1. WE NEED TO GAIN A CLEARER UNDERSTANDING OF THE HUMAN “WILL TO BELIEVE.”

As a young dad, I lectured my five kids about putting my woodworking tools back on their assigned hooks in the garage after they used them. Once, when one of my tools was missing, I yelled at the son who failed to put it back. I nailed the little guy. I harangued and harangued and I didn’t let up . . . until my wife softly took my hand and led me to the place where I had left the tool!

After sitting in many courtrooms, I have sensed how that wily little rascal, “the will to believe,” can corrupt the true facts of a case.

2. WE NEED TO STOP THE DEATH PENALTY

I shudder when I try to figure out how one mortal man can legally execute another mortal man. The Supreme Court’s ruling, in Atkins versus Virginia in 2002, did ban the execution of persons with intellectual disabilities, but I can’t let myself off the hook until the rest of humankind has this legal protection as well.

3. WE NEED TO DO EVERYTHING POSSIBLE TO SUPPORT AN ORGANIZATION CALLED THE “MURDER VICTIMS’ FAMILIES FOR RECONCILIATION.”

I am deeply touched by a certain fast-growing movement of families whose loved ones were murdered. Members of this group meet together and help one another to stop the agony that comes from screaming for “paybacks” for the killers of their loved ones. Now hundreds of murder victim’s families are helping one another to find a reconciliation. For them:

“Reconciliation means accepting that you cannot undo the murder but you can decide how you want to live afterwards.”

4. WE NEED TO FIGHT FOR THE VIDEOTAPING OF CRIMINAL INTERROGATIONS.

Due to our faulty “will-to-believe” attitudes, we will never “get the truth and the whole truth even with God’s help” when officers and suspects merely swear on the witness stand about what happened in the interrogation room. I believe that:

Judges and juries must be helped to see and hear for themselves everything that went on in the interrogation room. In this digital age it can be done by videotaping.

5. WE NEED TO RESPECT THE GOODNESS IN POLICE OFFICERS

I cannot name a school teacher who became a positive force in my life. But I can name a cop who did. His name was Bob Swanlund. He crossed my path on the inner streets of Denver when I was a teenager. He took to me and I sure took to him. On days off, we pitched a tent on Squaw Peak, the 11,540 foot mountain, 29 miles west of Denver and just in front of Mount Evans. We camped up there at least 40 times in three years. He became a father figure to me. During that time, I even tried to walk like him and talk like him. We stayed close until I went into the service in World War II and he became a department head in the Colorado State Patrol. During that period, he gently drummed into me the basic mission of every good police officer:

“The mission of every good police officer is to insure the safety and security of the neighborhood in which he serves.”

There is no job that is more noble than that.

SO NOW YOU AND I WILL BE MOVING ON.

I plan to go as a true believer:
I believe in God.
I believe in Evolution
I believe that all of us are brothers and sisters who were tied together by a single DNA match millions of years ago.
I believe that our earth revolves around the sun.
I believe there are thousands of solar systems like ours.
I believe that Martin Luther King was right when he said that “the arc of the moral universe is long but it bends toward justice.”

I believe that someday I may meet with Joe Arridy . . . I want so very much to do that.

In my career I came to care about many people like Joe:
So vulnerable
So concrete in their thinking
So unable to figure out all of the complexities going on around them
So trusting of those who understand more than they could
So quick to respond to kindness from others.
So I believe that someday I will be able to get down on the floor together with Joe and his train. . . and both of us will be laughing and shouting:

“Train wreck! Train wreck!

Comments:

Each of us “wills to believe” our government and justice system will find and punish the guilty, and free and protect the innocent. It is unsettling when the system doesn’t work. What are your thoughts?

Should people who have the label of intellectual disabilities have additional protections in the criminal justice system? Are the above action steps Bob suggests, so drastic and costly they cannot be implemented?

Bob’s song reminds me of Jazz, where each musician plays their own instrument and contributes their soul to the song. The members of Joe’s song were attorneys, friends, organizations… each adding their voice to the music. Is there a way to use each of our talents to work for social justice and change? Are you a “Group Man” or “Group Woman”? Is the song of Joe Arridy really a sad song?

Related Posts:

Hope for the Families

Richard Lapointe and more

Unequal Justice

Bob Perske’s website

Keep Climbing: Onward and Upward

All my best,

Mary

photo credit: Bobasonic

In the last post, Memorial Day and People with Disabilities I talked about how Aaron, my son who has autism, worked at a cemetery after he graduated from high school.

To the best of my recollection, this is how it worked:

The Landscaping Mobile Work Crew

Definition: Supported Employment Model: Mobile Work Crew

A small crew of persons with disabilities (up to 6) works as a distinct unit and operates as a self-contained business that generates employment for their crew members by selling a service. The crew works at several locations within the community, under the supervision of a job coach. The type of work usually includes janitorial or groundskeeping. People with disabilities work with people who do not have disabilities in a variety of settings, such as offices and apartment buildings. Supported Employment

Sometimes Cemeteries are for the living.

JOB ANOUNCEMENT: The cemetery board posts the lawn maintenance jobs for bids in the local paper.

JOB DEVELOPER:

The County Board of Developmental Disabilities (CBDD) job developer bid the job. Because of the size of the cemetery, the administration of the cemetery awarded several contracts. (For the five years I was involved, the CBDD got one of the contracts each year.)

Paid

The CBDD paid the workers minimum wage from this contract. Each member of the Mobile Work Crew was already on Medicaid/Medicare and the seasonal wages were within the limits of their SSI and SSDI requirements.

The job developer negotiated the details of the contract as well as was the contact person for any problems between the cemetery administration and the board as well as members of the mobile work crew.

Natural Supports

The cemetery provided the equipment. There was a garage-type lounge for all the crews and workers with a table and restrooms. They could mingle with the other workers from other lawn companies (non-handicapped) in the lounge. There was some natural support from the other workers who were doing the same jobs and the same sweating.

SUPERVISOR OF MOBILE WORK CREW

There were six people with disabilities and a supervisor on the crew. The supervisor was a year long salaried employee of the county board of developmental disabilities. She had experience working with people with disabilities and had been trained as a special education teacher. She had total responsibility for keeping the workers safe, happy AND getting the job done. If she needed extra help, she would go to the job developer or her other CBDD staff.

Aaron’s job coach was under her supervision (because she was in charge of the whole job) but worked independently with Aaron.

TRANSPORTATION

All the adults with disabilities would be transported from their homes to the sheltered workshop. The supervisor would drive a small van, similar to the vans the other lawn service companies used, from the sheltered workshop to the cemetery and then back to the sheltered workshop for the trip home.

Inclement Weather

On days when it rained, the crew could stay home if they wanted, or hang out at the sheltered workshop. If there was work at the sheltered workshop (usually not) they were able to jump in. If there was no work they could hang out with their friends and play cornhole, bingo or whatever the activity.

JOB DESCRIPTION

Ongoing Support

Before the crew began work, the supervisor and job developer made task analyses of each of the jobs. The individuals with disabilities applied and interviewed with the supervisor. If there was a good match, the training, modifications and accommodations were added to the individual’s Individual Service Plan (ISP).

OVERVIEW:

Who knew there were mowers about a foot wide which fit easily between the older tombstones? There were four mowers in this mobile crew.

There were two weed-wackers or whatever they are called. (The cords swing around and cut the weeds which the mowers miss.)
There was a “task analysis” of each job.

They were trained on the job. (They didn’t practice cutting the concrete in the parking lot to get ready*smile*)

Because the job was repetitive, it was a perfect fit for many of the workers. They knew exactly what they were supposed to do, and after a short time, were independent in many parts of the job.

If any of the workers needed adaptations (shorter hours, more breaks, special gloves or boots…) these were included in their ISPs (Individual Service Plans). Therapists (Occupational Therapist, Speech/Language and Physical Therapist) were available for the initial evaluations/training, if necessary.

Establishing Routines

The supervisor would start the day with some conversation, some joking around and individual attention to each of the crew members. They would get a short break mid-morning, they brought their own bag lunch, and a mid-afternoon break. But most of the day, it was sweaty and hot and lots of hard work—serious business.

The supervisor made sure the crew members had sun-screen, hats, appropriate clothing, solid shoes (no sandals), water….
She also worked side-by-side with the workers. She made decisions to go to another section if a funeral was in progress, if the area was underwater…; she pulled weeds… and did whatever it took to make sure everyone was successful, and the finished job met the requirements of the cemetery board.

Partial Participation

Aaron, my son with the label of autism, does not have the skills to run a lawnmower or weed-wacker. He would not be able to be part of the mobile work crew of 6 workers who are mostly independent on the job once they are trained. Because Aaron was in the official “transition” from school to work, he was eligible for a job coach from Rehabilitation Services.

So, because he had the physical support of a job coach, Aaron had the opportunity to join the workforce.

Is there some job he could do at the cemetery? Could he partially participate in this work?

After doing an ecological assessment of the job, Kim (Aaron’s job coach) decided Aaron could pick up the sticks before the lawn mowers came. So Aaron and she would drive a golf-cart to the area where the crew was mowing, and then they would collect sticks, dead flowers, and other stuff left on the graves, put them in a trash container tied to the back of the golf-cart and then take it to the dumpsters.

Aaron loved this job. First of all, he loved Kim, the job coach. She made him feel important, she helped him when he had trouble bending over, she helped him put the sticks in the trash container, she helped him wheel the container to the dumpster. Kim, looked at every piece of the job and asked herself, “How could Aaron at least partially participate in this job?”

Plus, Aaron loved riding in the golf-cart. When Aaron did particularly well, Kim would give him an extra long ride around the large monuments.

The side benefits were Aaron made a small amount of spending money, he paid into social security, he was out in the sunshine (with lots of sunscreen) and glowed with health, he was physically strong from all the exercise, plus the emotional benefits: he knew he was contributing, he was part of a group of people who valued his work, he could make all the noises he wanted (and wouldn’t wake up the dead), he enjoyed riding in the golf cart, instead of physical therapy practicing his balance climbing steps to nowhere—he had a functional way of practicing his balance in the real world. He had a great friend and mentor in Kim. It was a terrific experience.

And, for Memorial Day, 4th of July, Veterans Day… Who was the person who put the flags on the tombstones?

It was Aaron.

Trivia too good to pass up: One of the cemetery monuments is enclosed and heated. Yes, the person who died years ago was so afraid of being “cold”–they stipulated in their will that the space above the grave would be heated (including a back-up generator in case the electricity failed.) That is a powerful “fear.”

Keep Climbing: Onward and Upward

All my best,

Mary

Comments:

Have you ever seen a mobile work crew of workers and wondered how it worked? Is partial participation better than no participation? Should people with disabilities be allowed to work?

FOR MORE INFORMATION:

Partners in Employment

photo credit: Elliotphotos

This morning I saw an egret in our garden.

It stood majestically with its head tilted upward and its slender white body contrasting with the green of the newly planted tomato plants.

The bird looked around for a long minute, and then flew away.

Wait! An egret? This isn’t Florida or South Carolina. The ocean is a thousand miles away.

It got me thinking:

How did an egret end up in our garden? Was there a transportation glitch? Will s/he be back tomorrow? Does an egret worry? How does s/he solve problems?

Thinking, Worrying and ACTION

Like many parents of people with disabilities, I spend most of my days trying to see the world from my son Aaron’s point of view.

Thinking and trying to problem solve;

Worrying I won’t find an answer in time to help Aaron.

Now, I don’t stop there.

After my thinking and worrying,

I take ACTIONS to solve the problems, one step at a time.

This is a full time job. One I didn’t want, one I didn’t plan for, one I have to do every day.

Last week’s problem: Aaron’s 3.5 hour daily Van Ride.

Thinking and Worrying:

Will Aaron have a 90 minute ride today (the legal limit for one way)?

Or, will he and the other 5 people have to sit in the van and wait (and the van ride will actually be 110 minutes) because the staff is too irresponsible to open the doors on time?

Will Aaron chew the collar on his shirt to shreds in the 90-110 van ride? (I have had to buy him a new coat each of the last 3 weeks, he was actually spitting out the metal zipper pieces on one coat.)

Will he bite his hand and draw blood while he is frustrated?

Will he have to go to the bathroom? Have an accident? Get constipated because he is holding it for the 4 hours a day he spends in the van?

Will the van driver sing to him if he starts to get agitated? Will the van driver write Aaron up as a behavior problem?

Will the other people in the van get upset?

Will it be too hot in the van? Too cold?

Last week’s immediate ACTION

Ecological Inventory

I comfort myself that Aaron likes van rides, and Bruce, the van driver, seems to care about him.

After I had my thoughts together, I checked the documentation on the pick-ups/delivery times (the daily chart/notebook I wrote into the ISP), analyzed Aaron’s van behaviors, talked with the staff at both Aaron’s house and day program, made several phone calls, wrote a couple emails about the problem, found out a couple key people were on vacation, make a couple more phone calls….

Immediate Solutions I hoping for:

1. The staff of the day hab center (drop off point) now open their doors on time–removing the extra 15 minute wait time.

2. The van is repaired (storm damage) for our new Goodwill/Easter Seals program and available to pick up Aaron.

3. Aaron won’t have to be on the other van at all with the 5 other people.

4. Aaron will get a direct route to his new program which is 21 miles away, reducing his 4 hour daily ride to 2 hours.

“For every action there is a reaction.”

Long Term Solutions for the Transportation Problem

In the next few weeks, I’m hoping the van for the Goodwill/Easter Seals program is repaired from storm damage and will transport Aaron.

I know the never-ending cycle of thinking-worrying-actions will repeat:

Will the new van driver be as good as Bruce? Will s/he care about Aaron?

Since Aaron and his housemate will be taking different vans, the residential staff will have two different pick-up/drop-off times. They don’t have autism, but they don’t do well with change. (Little humor there.)

A shorter van ride for Aaron means the home staff will have to adjust their work schedules and add an extra half hour in the morning and evening. They will see this as Aaron messing with their day. Since they get paid by the shift, not hour—no extra pay, just an extra hour of responsibility.

I know, I know… I can hear many of you saying: “They work for Aaron, they should do what is best for him.” And, you are right. That is the bottom line and the reason Aaron will have the more direct, shorter route. But that doesn’t mean they will like it, or do it with a smile.

Short-term and Long-term Problems

Each day, I work a little on the long-term solution to Aaron’s residential staff issues. Some problems can be addressed in a week, unfortunately, others take years.

I have written about some of the residential issues before: Our house of cards| Disability style (Part 3) and “It’s not my job.”| Caregivers (Part 3)

And, while I can pull a Scarlett O’Hara and say, “I’ll think about that tomorrow.” My child is waiting for me to fix this.

If I don’t do it, no one will do it.

A Parent’s Life:

I’m writing this because I want to believe the egret was a “sign.”
I want to think the wonder of the unexpected, the unusual, the beautiful will help me focus on the good, so I can stop thinking and worrying about Aaron and the bad things that still need action.

Live for Today

I tell myself—quit thinking and worrying. Just enjoy! Just remember the sight of this regal bird and the unexpected pleasure it brought.

I remind myself–that’s enough thinking and worrying today. Get a cup of tea; take a bath; read a book with a happy-ever-after …and thank God for an egret.

Because even after you finish your thinking and worrying about the transportation issue, there is still the issue that one of the staff people doesn’t give Aaron a bath every night…and the million of other issues that need action.

There will ALWAYS be more battles to fight.

There will not always be more days to just enjoy life.

Maybe my advocacy actions will give Aaron a shorter, safer ride to his day program. And maybe I’ll be able to chip away at the residential problems, and maybe Aaron will get a bath tonight.

I can’t fly away like the egret.

But, maybe today I can stop thinking and worrying–at least for a few moments. And maybe that is the exact ACTION I need.

Your Turn:

In the comments tell us: What are you thinking about? Do you wish you could fly away from your problems? Have you seen something today that was unexpected and brought joy? Do you think and worry? Or, do you think, worry and–take action?

Keep Climbing: Onward and Upward.
All my best,

Mary

Quote: “You can always tell a mother. She’s the one who wears her heart on the outside of her body.”

photo credit: Okinawa Soba

Bulletin Board #4

Wretches and Jabberers 100 cities tour on May 12th

Find a city near you and don’t miss this exciting movie about two men who are changing the world for people with autism. Click for cities and ticket information

For related posts on autism, communication and Wretches and Jabberers:

Wretches and Jabberers Review: A jab to the heart.

I’ve spent a lifetime trying to get in touch| Wretches and Jabberers (2)

I love Aaron| I hate Autism

Autism Awareness Day| Direct Action is Better

The Right to Communicate (2)| We are the experts

What if? | Bob Williams

Disability Advocates Arrested over Budget Cuts in Medicaid

For those of us who care about people having the choice to live in the community and not in nursing homes, ADAPT members are marching and being arrested for all of us. See related story

Disability Law Handbook – Available in English and Spanish

The Disability Law Handbook is written in FAQ format and answers questions about the ADA, the ADA Amendments Act, the Rehabilitation Act, Social Security, the Air Carrier Access Act, the Individuals with Disabilities Education Act, the Civil Rights of Institutionalized Persons Act, and the Fair Housing Act Amendments.

Free copies may be downloaded or viewed ADA for the Spanish version and ADA for the English version.

To locate your local ADA Center go to www.adata.org

Does the life of one man with an intellectual disability matter?

Our friend Bob Perske sends this update to the story about Richard Lapointe. See previous articles here:

Unequal Justice

Hope for the Families

At Least Investigate Other Suspect In Lapointe Case
Lapointe Case With DNA findings, state should revisit an earlier suspect

April 19, 2011 Editorial (click here for original story)

If the term “reasonable doubt” means anything, Richard Lapointe should get a new trial. The meek, uncoordinated, mentally handicapped Manchester man was convicted of a violent crime he may not even have been able to commit, based on confessions of highly dubious merit.

But his efforts to have his case retried suffered another setback Friday when Superior Court Judge John J. Nazzaro rejected arguments that prosecutors had withheld important evidence, that Lapointe’s trial and appellate lawyers were incompetent and that new evidence proved Mr. Lapointe was innocent.

It can’t end here. The Lapointe case has seriously shaken confidence in the state’s criminal justice system. Officials should take a step to restore that trust, and that is to run tests on the other major suspect in the case.

Coerced Confession?

Mr. Lapointe was convicted in 1992 of the brutal rape and murder of his wife’s grandmother, 88-year-old Bernice Martin, in 1987. He wasn’t arrested until 1989; police were first interested in another suspect, a grisly career criminal named Frederick Rodney Merrill. But Merrill was eventually dropped as a suspect, at least in part because his blood type didn’t match a blood and a semen stain at the scene.

Mr. Lapointe, a dishwasher with no history of violent behavior, had been asking Manchester police officers about the case, and eventually drew their suspicion. On the Fourth of July in 1989, the police asked Mr. Lapointe to come down to headquarters and kept him there for more than nine hours. He didn’t have a lawyer and the session was not electronically recorded. Over the course of the evening Mr. Lapointe gave three confessions that were either nonsensical or didn’t jibe in major detail — how Mrs. Martin was dressed, how she was sexually assaulted, how she was strangled — with how experts later said the crime was actually committed.

Yet jury members said after the 1992 trial that it was the confessions that convinced them of Mr. Lapointe’s guilt. Since 1992, much has been learned about false or induced confessions; they happen with alarming frequency. Mr. Lapointe, alone and tired, said he told police what they wanted to hear so he could go to the bathroom and go home.

Tantalizing Evidence

Whoever killed Mrs. Martin was physically strong. He violently assaulted, tied up, raped and stabbed a woman who was short and weighed at least 160 pounds. Mr. Lapointe can barely tie his shoes, and has trouble lifting heavy objects. He has to keep checking and adjusting a shunt tube that extends from his skull through his neck and into his stomach that drains fluid from his cranial cavity, a result of his mental condition, called Dandy-Walker syndrome. But if he didn’t commit the crime, who did?

There is tantalizing evidence that Manchester police had the right man the first time.

A Manchester woman testified she saw a man much taller than Mr. Lapointe — about Mr. Merrill’s size and build — running madly from the housing complex where Mr. Martin lived at about the time of the crime. Mr. Merrill was seen in the neighborhood that weekend, and three days later committed an eerily similar crime, a violent sexual assault on a woman in her home in South Windsor, just a few miles away.

In the most recent appeal, lawyers for Mr. Lapointe presented DNA evidence that a pubic hair found in Mrs. Martin’s bedroom belonged neither to Mrs. Martin nor Mr. Lapointe, and that a pair of gloves found at the scene could not be tied by DNA to Mr. Lapointe. Although Judge Nazzaro didn’t find this evidence strong enough to grant Mr. Lapointe a new trial, for a number of reasons, he did allow that the pubic hair “may have come from the perpetrator.”

Well, let’s at least find out if the hair and other items found in the apartment are a DNA match with Mr. Merrill. Such action would not be unprecedented. In recent years state’s attorneys have voluntarily reanalyzed evidence in at least three cases in which convictions were reversed. The questions surrounding Mr. Lapointe’s case argue for a similar review.

Copyright © 2011, The Hartford Courant

Comments:

Please share your thoughts in the comments and social media of Twitter and Facebook. There are some amazing stories here.

The success of a movie about two men with autism who are telling their stories and inspiring all of us.

The Richard Lapointe issues of justice and freedom.

The story about self-advocates fighting for Medicaid and their rights to live in the community.

What are your issues? What would you be willing to go to jail for?

Favorite Quotes:

“Our lives begin to end the day we become silent about things that matter.” Martin Luther King Jr.

“A small group of thoughtful people could change the world. Indeed, it’s the only thing that ever has.” Margaret Mead

Wretches and Jabberers Review| A Jab to the Heart

Last Saturday, Aaron and I went to see Wretches and Jabberers. The director of Aaron’s new day program at Goodwill/Easter Seals, Miss P., went with us.

The movie raised so many emotions, lessons, buried feelings and experiences I literally couldn’t write or even talk about the movie for a couple days. The movie was a Jab to my heart and my memories. Here are a few of my thoughts:

Past Experiences with FC

In 1993 wrote about our story in First Hand: Personal Accounts of Breakthroughs in Facilitated Communicating (FC) edited by Anne Donnellan and recently (2011) in Real People, Regular Lives: Autism, Communication and Quality of Life by Sally Young. That is a very long story full of joy, sorrow, despair, hope and many shattered dreams.

Current Experiences with FC

The good news is when we got home from the movie, I sat with Aaron at the computer and for the first time in probably 10 years he typed with FC (Facilitated Communication).

“I OK” “Hi Mom” –just a couple letters–but it was a start.

Even better news is Miss P. said she would invite the technology people at Easter Seals to work with Aaron and see what kind of communication system we can set up.

Because Miss P. cared enough to give up her Saturday and go with us to Wretches and Jabberers, we have a common framework to begin our time together. There is no value I can put on this. It is priceless and HOPEFUL with a capital H.

Wretches and Jabberers Movie Review

There are two moments from the movie that are keeping me up at night.

1. Tracy is advocating in the Senator’s office about his concerns that budget cuts will mean he will remain homeless and reduce his support services. He feels a “tidal wave of emotions.”

2. At the end of the visit in Japan, Miki and Naoki Higashida say goodbye to the group and get into the elevator.

Tracy the Advocate

Most self-advocates, parents and professionals can understand Tracy’s wild emotions when talking about not getting the services he needs and his fears of getting the critical support system of his facilitator and support staff cut.

Unfortunately, the US Congress announced it is cutting Medicaid by 20%–yep, rather than tax the rich they are going to cut the programs for people with disabilities, the poor and the elderly–people like Larry, Tracy and Aaron. The Arc sent this alert (click here).

The nightmares and angst Tracy felt is the same that makes me wring my hands, stay awake at night…. I join Tracy in jumping up and down in frustration.

Tracy’s chance of getting enough funding so he won’t have to be homeless is worse now than when the movie was filmed. God Bless Us All as we face these life/death cutbacks.

Miki and Naoki Get on Elevator

In Japan, Naoki was one of the young people who type with support. (See picture above.) His Mom, Miki, coordinates the support system for her son. She is his facilitator, his personal care attendant, his friend and companion, his teacher, his speech/language/communication partner and she has had little support.

In the US, at least for the present, we have IDEA and mandatory school programs. But things are different in Japan, different in many other cultures.

This heroic Mom has had to research Facilitated Communication and everything else. There weren’t a lot of professionals in the film who were helping her. She seemed to be teaching the professionals and seemed very much alone.

As the presentation was over, and Tracy, Larry and the team were getting ready to go back to the US, the Mom gathered up her son and was getting into the elevator.

She waved, she smiled, and then… there was a moment when she choked up. I’m not sure if there was an actual tear (because my tears were filling my eyes).

There was a “look” in her eye. It said, “This meeting was wonderful. I finally found people who understand. But now it’s over. They are leaving the country and Naoki and I are back to being on our own.”

Parents know that “look”

Doug Biklen, one of the producers of the film, and I were on the TASH board together. For many years, I went to the TASH conferences and met fabulous leaders, educators, researchers and other parents who were working for people with severe handicaps. Together we were changing lives. We were doing important work and the lives of people with severe intellectual disabilities were full of hope and promise of an inclusive future where people could live, work, go to school, have families and friends in their home communities.

Each year, my friends and I would sell buttons, raise money, beg, borrow, and barter our way to spend a long weekend with these experts and advocates at the conference. We were up from dawn to late at night learning everything we could–picking the brains of anyone who would listen. It was exhilarating; we would gather ideas and hope. Then the conference would be over. We would give our farewell hugs, get into the elevator, and begin the trip back to our homes and the status quo of the lives we left behind. We had to become the warriors for our children. If we didn’t do it, no one else would.

Because of what we experienced at the conference, we were different; we had new ideas and hope. But there was no one locally to hold our hands. There was no one who would stand by us and help. There was no one who even knew what we were talking about. Almost none of the professionals who had the power to make change were helping us. When we accomplished something for our children, the “researchers” would include us in their books and scholarly papers, but mostly we were abandoned to make things happen by ourselves.

I know the look in Naoli’s Mom eyes. I have seen that look in my own eyes. I have seen the look in other parent’s eyes.

Here is a short video of Larry and Tracy at the TASH conference in Denver

Conclusion

Wretches and Jabberers is a powerful movie. Be prepared to feel strong emotions. Expect to learn new things aWretches and Jabberers Movie will be shown in another 100 cities around the US. Get a ticket and let us know what you think.

Keep Climbing: Onward and Upward.
All my best,
Mary

Due to Popular Demand, Wretches and Jabberers will be seen in 100 cities:

May 12th, 2011 at 7:30PM

The first cities have been announced in our “100 Cities. One Night For Autism.” Event being held on May 12th, 2011 at 7:30pm! Be sure to check out future editions of our newsletter for specific theaters and additional cities! Here is the list, in no particular order:
Derry, NH – Bijou, OR – Annapolis, MD – Birmingham, AL – Fort Collins, CO – Athens, GA – Des Moines, IA – Moundsview, MN – Asheville, NC – Allentown, PA – Greensburg, PA – Columbia, SC – Nashville, TN – Knoxville, TN – West Jordan, UT – Midlothian, VA – Eau Claire, WI – Grand Rapids, MI – Columbus, IN – Lansdale, PA – Washington, DC – Chicago, IL – Memphis, TN – Oakdale, MN – Lincoln, NE – Pickerington, OH – Sheboygan, WI – New Berlin, WI – Rothschild, WI – East Brunswick, NJ – East Windsor, NJ – West Palm Beach, FL – Dedham, MA – Farmingdale, NY – Providence, RI – Huntsville, AL – Plainfield, IN – Baton Rouge, LA – Kalamazoo, MI – Louisville, KY – Ypsilanti, MI – Toledo, OH – McCandless, PA – Fairfax, VA – Bakersfield, CA – Honolulu, HI – Lafayette, LA – Whitter, CA – Laguna Niguel, CA – Sacramento, CA – Colorado Springs, CO – Durham, NC

RELATED POSTS:

I’ve spent a lifetime trying to get in touch| Wretches and Jabberers (2)

Until Eternity| Anne McDonald

I love Aaron| I hate Autism

The Right to Communicate (2)| We are the experts

What if? | Bob Williams

Remarkable Parents and Advocates who Never Give Up

Please add your thoughts in the comments:

Do movies like this make people with autism more human? Like Tracy, have you ever felt, “a wave of emotion”?