Posts Tagged ‘developmental disabilities’

In the last post, Memorial Day Parades and Attitudes toward 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.

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 Work

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.

Kim, 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: How this worked

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: How this worked for Aaron

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 the 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

Mary

Comments:

Do you have any experience working with people with disabilities? Does you company use enclaves? mobile work crews? 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:

Article about Dial Soap hiring people with disabilities because it made good business sense.

Partners in Employment A FREE online course about supported employment.

Kill the Turkeys! Life lessons for people with disabilities

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St. Nicholas treats

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Jolly Ole St. Nicholas| Christmas List Disability Style

(Parody on popular Christmas carol)

In our family, December 6 is the night you leave your Christmas wish list in your shoes or stockings. The German tradition says St. Nicholas comes when you are asleep, exchanges your list for a small bag of goodies and then delivers your list to Santa.

I’ve shared some of our great family stories from when my sons were younger in St. Nick and the Batman socksand St. Nick| Two Special Sons.

Aaron turns 38 years old next week. So what would a Christmas wish list look like for a parent of an adult with autism and developmental disabilities?

The old kindergarten teacher in me thought you might want to sing along as I make a parody of the popular Christmas song, Jolly Ole St. Nicholas, and send my Christmas list out to virtual Santa Land.

Jolly Ole St. Nicholas, lean your ear this way.
Don’t you tell a single soul what I’m goin’ to say?
Christmas Eve is coming soon, now you dear ole man.
Whisper words of hope for us, reassure us if you can.

Aaron’s survived the ups and downs of another shaky year,
Thank you for our family and friends who are so very dear.
We did our best to make things work, but the path’s not clear.
Please St. Nick, we beg of you, hear our fervent prayer:

Aaron needs a roommate quick, one with family ties.
Someone who will be his friend, could be girl or guy.
An IO waiver would do the trick, at least a level 5.
Someone who‘s a gentle soul who wouldn’t harm a fly.

Aaron voted for our President he knows his fate depends
On Medicare and Medicaid and the generosity of friends.
He wants to know HUD will exist for the house he now calls home.
He wants to meet his neighbors not spend his time alone.

Keep him safe and free from harm, find us staff who care.
No more elves with phony smiles, who do whatever they dare.
They’re now suspended by the state and deserve lumps of coal.
Assure us our government has the resolve to fill their role.

Aaron wants a healthy life, join groups and have some fun.
He wants to swim and ride a horse before next year is done.
Aaron’s mom and dad love him so, but worry night ‘n day.
Dear St. Nick we count on you–Aaron’s in your hands today.

Comments:

What other things would you ask St. Nick for? Any stories to share?
Did you check out the Batman socks story link, it’s a good one.

Keep Climbing: Onward and upward.
All my best,
Mary
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Related Posts about St. Nick and Christmas:

Mom’s I.E.P. for the Holidays

St. Nicholas meets the Disney Princesses

There’s no Santa Claus| Transformational Experiences

Age Appropriate Activities for People with Disabilities| Chocolate Covered Fun.

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To celebrate the new school year here are some of my favorite posts:

Article 1: Why Do We Go to School?

Article 2: Back to School| A New Year of Learning

Article 3: Back to School| What is Inclusion?

Aaron learning money skills to use in store

Functional Curriculum

When my son Aaron was in school, shopping was part of his curriculum. From the time he was ten years old he went to the bank and grocery one day a week as part of his special education school program.

This was best practice and came from the work of Drs. Lou Brown, Alison Ford, Sharon Freagon and many others. The idea of a functional curriculum for people with autism, intellectual and developmental disabilities is:

* it takes longer to learn skills, so let’s make sure we teach important skills and not waste their time on dumb stuff

* it takes lots of practice, so let’s give the student lots of opportunities and trials

* use it or lose it, so let’s make sure the skill is something the student will need their whole life

* transition from school to adult life will be smoother

* we only teach skills that if the person didn’t do it, someone else would have to do it for them

* the ability to purchase items would give the person more dignity, self-esteem, self-determination skills and choices in their life

The way it worked was each week, Mom sent in a check for $10.00 and a shopping list. The class went to the same grocery store (because each store is different). Each student cashed their check at the bank and then bought items from the list to take home.

In addition, students also planned a lunch to be made in the classroom the following day. Each would purchase a couple items for that group lunch. These items were purchased with the classroom credit card.

This functional curriculum was based on the philosophy that Aaron would go to the grocery the rest of his life. Before the school year started the IEP team decided this was a high priority skill because he would need to buy food and other items when he was an adult. If he didn’t learn to purchase these items, someone else would have to buy them for him. If Aaron could purchase the items he would have more choices and say in his life and therefore a better quality of life. (Who wants someone else deciding you can only have Cheerios for breakfast all your life.)

Related Service Staff

The curriculum was designed by the IEP team including specialists and the parents. After all, who would be taking the student to the grocery on the weekends, summer, and after school. And who knew what the student liked better than their parents?

I was in the school a lot and went on many of the community training trips with Aaron and his class.

It takes a Village

The speech and language therapist helped Aaron build picture sequences of “shopping at Krogers,” check-off lists with pictures for grocery lists, and learn to interact with the cashier “Thank You” and give a High 5 to the bagger….

The occupational therapist helped Aaron figure out which coin purse/wallet worked best, learn to pay with the next highest bill, learn how to take the money out of his wallet (hold wallet in left hand and take out bills with right) and after many failures of getting the change back in the wallet–it was decided Aaron should just put the change in his pocket….

The physical therapist helped Aaron figure out how to climb up and down the steps on the bus (hold on the rail with his right hand and count the steps), how to maneuver the parking lot (and yes we had an IEP goal that said with 50% accuracy), how to enter the right door–even if there are two “in” doors,
how to reach the items on the bottom shelves (hold on to the grocery cart with his left hand and reach with his right)….

Depending on the therapists schedules, they might only be involved in periodic assessments, or they could go with the class every week. This was an excellent way for the therapist got to really see Aaron in this environment and practice REAL life skills.

The teacher and assistant teachers went every week with the 6-8 students in the multi-handicapped class. She/he helped Aaron match his pictures to the actual items in the store, find his favorite items and put them in the cart, learning appropriate social skills….

After High School

Unfortunately now that Aaron is out of school, he has lost most of those skills because adult service staff refuse to take him to the store or don’t have the knowledge or support they need. Here is a story about Aaron’s home (click here). It is not the fault of the staff. Some of them are very loving and do a great job.

So I take him every weekend when he is home with us. Here is a story of a recent shopping trip (click here).

Aaron and I are a team and we have worked out our own system. We only shop for about 10 items and Aaron puts the items in the cart. Sometimes Aaron will grab something off the shelf and if it is anywhere close to something he might want, I’ll let him buy it. ie. if it is a bag of cookies or cereal –he can keep it. If it is a box of denture tablets probably I’ll tell him what it is and put it back.

Choices: Quality of Life and “If Only”

If I had the opportunity to change things in Aaron’s life, it would be that adult services used a functional curriculum and adult residential services gave Aaron and others with autism and severe disabilities the opportunities to practice their skills. There is no question Aaron would not currently be LOSING these skills. There is no question these skills would enhance Aaron’s self-esteem and quality of life.

The reason I could insist on these skills being taught and used when Aaron was school age was because of the federal mandate in IDEA. The Individual with Disabilities Education Act said that parents were part of the IEP team and the parents had due process if they disagreed with the school personel. There is no such mandate for Adult Services, no due process for parents and/or guardians. Plus, in Adult Services the staff does not have to be trained or have any teaching license.

As my friend Deb used to say, “When I am made Queen of the Universe” I will declare it. Until then, I’ll take Aaron every weekend and give him as many functional experiences I can.

And of course, I’ll dream of the day I am Queen of the Universe. *smile*

What ifs? Comments?

Any stories about your child’s school experiences preparing them for the future? Any luck with using those skills in their adult life?
Anyone else want to be “Queen of the Universe”?

Keep Climbing: Onward and Upward

Mary

Related Posts

Building Community| One grocery trip at a time

It’s a Jungle out there| Inclusion in the grocery store

Kill the Turkeys! Life Lessons for People with disabilities

The Case of the Bleeding Pork Chop

This week I received an “incident report” from my son’s adult day program–they are the ones who take care of Aaron from 9-4 each day.

The residential staff, who prepared Aaron’s lunch, were written up for: “safety issue—undercooked pork leftovers in lunch.”

The report read:

“For the second day in a row, Aaron was sent in with pieces of pork chops that were undercooked. The insides were pink and bleeding.

Pork must be cooked all the way through or it can make you very ill. Our concern is that these are leftovers. So he was served this raw the first time.

We cooked the pork to completely done before serving it to Aaron to insure his health and safety.”

What to do?

Since Aaron is 37 years old, as his parents and guardians, over the years we have had scores of “incident reports” since he moved into a supported living home with another young man. So, no panic–but certainly there is concern. Aaron has autism and can’t speak for himself, he is totally dependent on others.

The day care staff solved the immediate health and safety issue. Thankfully, they took the extra time to cook the pork chop for Aaron’s lunch and he didn’t go hungry or get sick.

Now, the issue becomes one of communication and prevention.

How can we get everyone to work together so this and other safety and health issues don’t happen again?

Calling in the Team: Making the System Work

I called our case manager and asked her to set up a meeting to talk about pork chops, transportation, personal care and communication. The pork chop “unusual incident report” is just one of several items of concern: late arrivals, communication charts not filled out….

No one wants to go to meetings, no one wants confrontation–and everyone seems to want to point fingers.

Safety is More than Just about Cooking

It used to be illegal for one company to provide the house that Aaron rented, the residential support staff that took care of him from 4PM to 9AM and the day program staff who support him from 9AM to 4PM.

Because of current “anti-government” feelings, those restrictions were changed. Now one company can have the contracts on all three services: rent, residential and day care services–Sort of like the institutional model of old.

Fortunately, Aaron has three different companies and I think this gives him a better system of checks and balances and the day program could report the residential company and vice versa. Aaron can’t be dismissed or forced to move out if the only company decides there is a problem or the parents ask too many questions.

The real health and safety issue in this story is that Aaron, and other vulnerable people, need caring professionals who are willing to advocate for him and file incident reports and communicate problems.

Separate companies make this more feasible.

The real bleeding only happens when professionals keep quiet and don’t report problems and help make the system work.

HOLIDAY BONUS for Independence Day

Check out Mike Korins singing “Up to the Mountain” (a Martin Luther King song). He is an 18 year old man with the label of autism.

P.S. Yes, some people with autism can not only talk, they can sing!

Up To The Mountain (MLK Song) Lyrics

I went up to the mountain
Because you asked me to
Up over the clouds
To where the sky was blue
I could see all around me
Everywhere
I could see all around me
Everywhere

Sometimes I feel like
I’ve never been nothing but tired
And I’ll be walking
Till the day I expire
Sometimes I lay down
No more can I do
But then I go on again
Because you ask me to

Some days I look down
Afraid I will fall
And though the sun shines
I see nothing at all
Then I hear your sweet voice, oh
Oh, come and then go, come and then go
Telling me softly
You love me so

The peaceful valley
Just over the mountain
The peaceful valley
Few come to know
I may never get there
Ever in this lifetime
But sooner or later
It’s there I will go
Sooner or later
It’s there I will go

Share your thoughts:

Do you have any similiar stories? Isn’t Mike Korins terrific? Do you think there are adequate checks and balances? Should one company be allowed to do all three services (rent, residential and day supports)?

Keep Climbing: Onward and Upward
All my best,

Mary

Related Posts:

America the Beautiful| Through the Autism Family Car Window

Partners in Policymaking| 25 years of Making our Government Work