Archive for February, 2011
The Climb: New Theme Song for our blog
Attention all music lovers: Pastor Snoopi Botten and Blake Roberts have added their magic digitalized effects to The Climb, (click on link).
Blake suggested this song become the Theme Song for the Climbing Every Mountain blog.
It’s PERFECT and their effects are pure magic.
You might remember both Snoopi and Blake shared their version of the classic Do You Hear What I Hear (click on the link) on Christmas Day.
Check out their earlier post for their amazing personal stories and the details of their method for helping us all hear and see things in different ways.
Thanks to both Snoopi and Blake for being part of this community.
Pete Wright, Esq. of wrightslaw.com
Two Workshops in Cincinnati, OH to discuss the educational implications of chronic illnesses/disabilities. These workshops should be great for anyone interested in recent changes in IDEA, 504 et al… and children with chronic health needs.
APHOES National Conference: May 5-6
For conference agenda and registration click on links.
If you have any questions, please contact the School Intervention Program at 513-803-0513 or by email (SIP@cchmc.org).
Our House of Cards|Disability Style (Part 2)
I am going to try to describe what is happening to Aaron, my son who is 36 years old and has the labels of autism and developmental disabilities. It is a complicated story. In the comments, let me know if this makes sense.
Click on the Following Articles for Additional Background:
Have you ever rented a house or apartment?
If you answered “yes” you are like the majority of us. It is a typical, normal experience, right?
You sign a lease.
You pay your rent on time.
You take good care of the inside of the house, providing the furnishings.
You pick up the sticks and papers in the yard.
You pull weeds, mulch and plant flowers.
You don’t put the garbage out until after 6 PM.
You get along great with your housemate and the neighbors.
Everything’s great, right?
In Aaron’s case, he follows all the above, and has lived there for over 9 years.
In addition, since we figured he’d be living there the rest of his life (possibly 60 years) Aaron paid $1000 to build a patio on the back of the house.
Aaron got a HUD rent subsidy so he would only need one other housemate to help pay the rent. With his family, he even showed the owners of the house (a non-profit) how to get HUD approval.
Perfect tenant, right?
But, things are not perfect.
Because of his severe disabilities Aaron and his housemate need 24/7 support staff.
The company that manages the support staff has organizational, financial, and other issues (not unlike most residential companies).
So, though we love and trust Annie, our terrific head staff person, the company can’t ever seem to get additional staff to help–especially on the weekends.
The company continually blames Aaron saying his autism and intellectual disabilities are more difficult than other “clients,” so no staff want to work with him.
So we are stuck.
The county also says all the people who live in a house have to have the same residential provider.
So Aaron, Jack (his housemate/guardians) have to agree before we could change providers.
The county also tells us all the providers have the same issues, so it wouldn’t really make much difference.
So we suck it up, but NOT quietly
With tremendous effort and lots of positive thinking, we keep working to make things better, and fall into an okay routine.
The Plot Thickens
What would you think if one day your landlord calls and says, you have a vacant bedroom in the house and there is a homeless person with severe disabilties who needs a place to live?
Further, the county is short on money and passed a regulation saying all empty bedrooms will be filled.
And oh, since you don’t own the house–tough shit!
Oh, and by the way, the residential company you endure will now be in charge of three people. So if you want to change companies you will need not two–but all three people/guardians to agree before you can change.
They do promise additional quality staff for a couple hours in the morning and evening to help get everyone dressed, bathed, toileted, fed, and groomed. But we have been with this company for over 9 years and know they often make promises they can’t keep.
Again, these are not evil people, they just don’t have the support system THEY need.
The Perfect Storm
If this was a Stephen King novel, at this point in the story there would have to be some unforseen twists to really make things interesting.
Since, being a person with a severe disability isn’t drama enough, sure enough The Perfect Storm overturns the barely floating status-quo boat.
1. We still have trouble finding adequate staff.
2. Jack, Aaron’s housemate, “falls,” breaks his leg and is now using a walker (with great difficulty).
3. The replacement staff are “trained” by the supervisor over the phone. (Yep, couldn’t make this up.)
4. Aaron’s behaviors are increasing and when switching to new medications, the new staff (trained over the phone) accidently gives an overdose of Zoloft.
5. The county, like all government agencies, is desperate for funds.
6. The visit for the NEW housemate is set up for Tuesday night. Like it or not. (another post)
7. Make up a couple more dramas and they are probably true.
Since the county and the residential provider both profess they follow the principles of normalization, inclusion, self-determination and John McGee’s Gentle Teaching…. let’s start there.
A normal person rents a house or apartment:
Unless they violate the terms of the lease, the landlord doesn’t care what you do with the rooms in the house. In fact, they would only care if you brought in an extra person.
A person with a disability rents a house or apartment:
The landlord can demand you put a perfect stranger, with severe disabilities, in one of the rooms.
Even if you say, “These houses aren’t private”– can you imagine going to any other group of people in HUD owned homes, people in the projects, people who are poor, elderly, unemployed, needy and telling them they HAD to add a stranger to their household?
Hey, most people don’t even want to have relatives and people they know move in. Strangers, I don’t think so.
The house is in a residential neighborhood of single family homes. The houses is small and not zoned for a group home.
Adding one or two more housemates will mean there are twice as many cars, twice the number of staff, twice the number of pick up and deliveries.
One of the reasons the neighbors have been so nice, is they got to know Aaron and Jack. Our efforts to blend into the neighborhood and keep the house looking good has brought a level of acceptance. There is a delicate balance for inclusion in the neighborhood.
It seems when there are budget cuts–self-determination and individual choices are scratched off the books.
There is no way adding a new housemate is in Aaron’s best interests.
Aaron and Jack have had a terrible time getting quality staff, period.
Few will take them into the community. As Aaron’s behaviors have deteriorated in the last year and he is on more medication, there is less incentive to take him even for walks in the neighborhood, as well as into neighborhood stores…. Aaron is already isolated. Adding a third housemate will make this even more difficult.
Dang, let’s not even go there.
This isn’t all a surprise. In 2009, my husband and I challenged the county board’s authority to do this. Earlier this year, we were alerted this might be happening. See above related posts.
I keep hoping there is some sort of HUD requirement saying the government can’t just bring strangers to live in your house. (There is that constitutional protection against the government forcing people to house soldiers.)
I keep hoping some sort of civil rights, or just human compassion will prevail.
I keep hoping the fact that there have been two MUIs in the house in the last couple months (broken foot and overdose) will give people a clue that the house is in crisis.
I keep hoping the history of lack of adequate staff will also tell people that poorly paid and trained staff taking care of two men who need total care is a difficult job. Adding a third person is ridiculous.
I keep hoping that SOMEONE will notice the company in charge is filling for bankruptcy–duh! Do we really think it is safe to put MORE people in their charge?
We are using every avenue to fight this forced placement.
We are also trying to get the county to think outside the traditional funding box.
For years, we have heard about micro-boards, foster care, private providers, HUD houses, community initiatives, pairing people with disabilities with people who are poor, displaced, out of work….
Where are the creative thinkers who used to work with us? Where are the professionals who are being paid to problem-solve? Where are my friends who I trusted and gave years of volunteer time?
God knows I cry for the poor man who needs a home. If we weren’t in such turmoil, I’d personally offer to help him.
God knows I also hear from my relatives and neighbors that the government is too big and needs to be cut.
God knows I even hear some people tell me, “You created this defective child, it is your responsibility to take care of him.”
Anyone have any ACES up their sleeves? Any trump or wild cards? Hey, I’ll even consider some creative card tricks *wink wink*.
Thanks to everyone who has sent such kind notes of encouragement. We will survive. Aaron will survive.
But, geez louise… I figured out the Medicaid Waiver, I figured out the HUD rent subsidy and now people all over the area are using those supports. I’m exhausted.
We’ve taken Aaron home with us 15 of the last 30 days because of the turmoil in the house…And that was before the notice this week of the new housemate. Share your thoughts.
Keep Climbing: Onward and Upward
All my best, Mary
Aaron, my son with the labels of autism and developmental disabilities, had a doctor’s appointment so I brought him late to his adult day program.
A Visit to the Jungle—Jungle Jim’s that is.
Thanks to cell phones, I connected with his group on their community outing at Jungle Jim’s. This is a mega grocery store with a jungle theme: animated monkeys, giraffes, and other animals spread throughout the store. It’s a pretty neat place and features foods from around the world.
Like most people, Aaron and I got a grocery cart when we entered the store.
Adults with Disabilities in Large Group
We found the group–immediately.
Coming down the meat aisle, two women in their 30s were holding hands walking in front of three people in wheelchairs. Both woman had Down syndrome were about 5’6” and weighed about 200 pounds. Another man (about 50) was holding hands with a female staff person. The second staff person was pushing one of the people in wheelchairs. They did not have any shopping cart.
Gosh, I wonder how we found them so easily?
When one of the staff people saw Aaron pushing a grocery cart, she said she was surprised he had those skills and could tolerate the noise and confusion of a grocery. I assured her Aaron was fine and in fact, since he was in second grade, grocery shopping was part of his functional curriculum (click here).
Plus, when he lived at home, he went with me to the store 4-5 times a week. I expected Aaron to do well in the grocery and even expected him to participate in the shopping and make choices for the items he liked. Aaron actually met some of his former classmates at our community store (click here).
The staff person didn’t really pay attention to what I was saying. Since she was the professional in charge, and I am clearly just the mother, she politely said I could leave and she would watch Aaron (along with the other six people).
To her surprise, I smiled at her and said there was NO WAY I was going to leave. (What I actually said was a lot nicer–what I was thinking was actually not a lot nicer.)
A group of preschoolers were also visiting Jungle Jim’s that day. The teacher had prearranged an instructional tour. A store employee, dressed like a jungle safari guide, was explaining how cheese comes in huge round blocks from many different countries. Even with the guide in her camouflage pants and a netted hard hat, and the teacher saying “Who can tell me what shape that is?” all the kids were gawking at our group.
Our two aides, of course, just kept herding the group of adults with disabilities down the aisle. They talked to each other about the general prejudice of our society toward people who are different, and young children who just didn’t know any better. After all, they are Christian women who care about the “least of God’s children” and they are the enlightened ones earning their crown in Heaven.
Purpose of the Grocery Trip
Unlike the preschoolers who were making the trip to the grocery an educational experience, I asked one of the aides what our group was buying at the grocery. She shrugged her shoulders and said, “Oh, it is the end of the month, we are out of funds–so we are just looking around, enjoying the air conditioning.”
Shock in Aisle 4
I was with Aaron and our group for about 15 minutes and I was on the edge of hysteria. I literally had to do calming breaths. I felt like I was in a time warp from the ‘80s. I kept thinking of the years Aaron’s occupational therapist, speech/language pathologist, physical therapist, teachers and instructional assistants taught Aaron to plan his purchases, buy items, make choices, use his picture communication book, use his wallet, push the cart without hitting anyone, maneuver around kiosks and displays set up in the middle of an aisle…. Aaron even worked at a grocery store, with his job coach, stocking shelves as part of his work transition plan.
I also thought about everything I knew about normalization–to go to the store in small groups (no more than two) and blend into the population. To have the skills and behaviors of a consumer so you were a valued customer and respected member of the community.
I remembered Alison Ford’s presentation about, “There is so much more at the grocery store” and the Syracuse Functional Curriculum. And Marc Gold, Lou Brown and Sharon Freagon’s slides using the grocery store for a teaching environment because it was a community environment that would be used for a lifetime–multiple trials over multiple years.
Inclusion and the Jungle
One of the lessons of nature is that for animals to survive, they need to blend in, or be camouflaged into the environment. That is why polar bears are white, and alligators look like logs floating in the river. It is why the female cardinal, who carries the young, is a dull brown and her male partner is bright red to attract the attention of predators.
The history of man also tells us about the power of in and out groups. We segregate criminals in orange jumpsuits so they stand out and everyone knows there is danger. The Nazi’s forced the Jews to wear Stars of David arm bands to clearly stigmatize and identify their enemies. Police uniforms identify people who we can ask for help.
The history of people with disabilities also includes the stigma and isolation of people as being so different, so dangerous that parents would point to strangers and urge their children away.
I talk about some of these stigmas in my story about America the Beautiful (click here).
Because Aaron does not communicate like other people. Because Aaron has some bizarre behaviors. Because it takes people a while to get to know him. Because of his labels… we make sure Aaron is well groomed, wears stylish clothes and can survive by blending into existing groups.
We practice the principles of normalization and inclusion everywhere we go. We work hard to help Aaron be seen as a contributing member of the community, a valued member of a family, a friend, a loving uncle.
Like the jungle, “the survival of the fittest” belongs to those who can camouflage themselves into the natural world, or in disability-speak, be included in the community.
Obviously, none of these aides had read about this, or anything else. In fact, these loving caring aides who work for minimum wage do the job as a labor of love. They are not trying to stigmatize Aaron and his group–they just don’t know any better. They are not trying to alienate and waste the people’s time and let their skills deteriorate—they really, really, really just haven’t been trained.
So, of course, Tiger Mom took over.
That day I decided to stay and try to teach some skills. I have trained parents and teachers, I have a lifetime with Aaron so Tiger Mom went into action.
I figured the normalization lesson would have to wait because there was no way our group was ever going to blend in. (How could two aides handle seven people with significant disabilities, three who used wheelchairs?) We also did not have enough staff to divide up in small groups and spread out in the store.
Let’s Buy Something?
So I suggested, “Let’s buy something, and I will treat. What could we make for a snack? Or what do you need?” (MAKING CHOICES—giving dignity to the people.)
One person suggested we make smoothies. Great, smoothies! (That is AGE-APPROPRIATE. People of all ages like smoothies. It was hot outside so it was appropriate for the time of year.) Smoothies it is!
I ask the group what ingredients we needed to make the smoothies. Each of the seven people had a particular item to find on the shelf and put in the cart Aaron was pushing (FUNCTIONAL SKILL: IF THEY DIDN’T GET THE ITEM, SOMEONE ELSE WOULD HAVE HAD TO GET IT.)
Aaron pushing the cart was a balancing and behavioral technique to keep Aaron on task and keep him from running off down the aisle. It also put Aaron in a valued position because he was needed for each item. It also required each of the people to (SOCIALLY INTERACT) with Aaron.
Teaching “Learned Helplessness”
The people with disabilities all got into it. But the kind, but totally clueless aide was doing everything for them–even putting the item in the cart for them. And, obnoxious me, I would return the item to the person, put it in their hands and ask them to put the item in the cart. (LEARNED HELPLESSNESS.) Geesh!
Since Aaron was pushing the cart, he was like the leader of the safari. He did great, but I swear, the others had either lost their skills or hadn’t had much opportunity to learn about PARTIAL PARTICIPATION and practice being an active participant in the shopping environment.
We had a hard time finding the frozen juices, but guess what? Near the ceiling, there was a big sign that said “JUICE” – which I of course, pointed out so the group could READING CONTEXT CLUES it.
The aides–actually, I don’t know what the aides were thinking—they looked at me like I was nuts to point out a sign to these people who they knew couldn’t read.
The safari ends with checkout and the group being loaded into the vans.
I let Aaron leave with the group. I said goodbye and I hoped they enjoyed their smoothies, and then… I sat in my car and cried for 20 minutes and was depressed for the next week.
All of our fight for inclusion in a regular school, fight for a functional community-based curriculum, all the research and knowledge we have acquired for the last 30 years in special education–and here is Aaron in the middle of what felt like a freak show.
Even if I tried to feel some redemption about the functional shopping experience with the outcome of them making a smoothie, and even if I tried to ignore my overstepping boundaries and staying, “Just a mother.” The low expectations (click here) and lack of skills felt hopeless. All the skills that Aaron had, and now was losing.
I haven’t resolved this. The aides were good people doing a tough job. Imagine lugging 7 adults in and out of vans, and not having the funds to buy anything on a trip to the grocery?…. but my heart just breaks for Aaron. His dream plan, years and years of work–and it is like it never happened.
Children have value and hope. The adult world has no mandates, no IEPs or due process. Where are the people who certify these programs? How can these good aides have so little support and resources?
Thanks for listening, I know you don’t have the answers either. I stopped in Aaron’s day program again yesterday and the group was making lady bugs on green construction paper leaves from a pre-school activity book. Geesh!
Deep breathe, in-out-in-out.
Lady bugs are supposed to be good luck, right?
I feel like I should end with a joke or something to lighten this up, but I feel betrayed by the paid “Professionals” in our county who know better. Where are they?
Am I really supposed to just “feel grateful” that Ohio has any programs at all, and Aaron’s developmental twin in Tennessee and South Carolina are just sitting at home doing nothing?
Of course, last year was worse and at least now, Aaron is out of the crowded back room with no windows at the sheltered workshop.
He is surrounded by kind people who care about him. It could be worse. But wow, it certainly could be better.
Keep Climbing: Onward and Upward
All my best,
Please chime in:
What would you have done? Would you just watch? Would you just leave Aaron and go? Would you go back to the grocery for a bottle of scotch? Any suggestions? In this jungle, what would a “normal” shopping trip look like for the people with severe disabilities? What message do you think the preschoolers got? What would be better?
If you liked this article, please share it on Facebook, Twitter and other social media. Thanks.
Last post, I shared some videos from the Norweigan Association of the Blind.Here’s a collection of videos about the IEP and Acronymns. I’m still looking for any videos or websites about the rights of adults with severe disabilities, autism and parents of adults.
I hope you will share your thoughts in the comments.
Who sould be at an IEP?
What is an IEP?
Special Education Acronymn Song
Keep Climbing: Onward and Upward
All my best,
Over to You: What do you think?
Do you have other YouTube videos to recommend? Other social media sites?
Does anyone know of any sites or videos about adults? Parenting adults with disabilities?