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.
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.
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?
For those of you who have been following our journey to move Aaron, our son with the label of autism, home to our county, this is Part 12. You know how complex and difficult this has been. Here is the link to Part 11: 1st miracle| Aaron needs a Roommate| Part 11.
Even with the two miracles, don’t breathe yet. But we now have two pieces of the triangle in place.
The third part of our miracle triangle is great staff. I’ve talked about the critical importance of staff in Caregivers: Part 1, 2, 3
But as Scarlett O’Hara says, “I’ll think about that tomorrow.”
Here are the details in two emails: one from early this morning (2:30 AM—mothers never sleep); the second is after our dinner meeting (9:00 PM—mothers put in long days).
Task Analysis for Monday Morning:
From: Mary E. Ulrich [mailto:[email protected]]
Sent: Monday, September 26, 2011 2:28 AM
To: Everyone I could think of who might be part of this move
Subject: Aaron’s house
Hi Everyone,
I met with the director of the non-profit on Friday. He said they closed on the new house last Monday and so we can begin the countdown to a move-in date of Nov. 1. Yea, Yea!
Thanks to the Non-Profit and the County Board of DD for making this new resource available to Aaron and our community.
So now there is much to do to be ready by Nov. 1st.
HUD
The director of the non-profit is finalizing the paperwork to become a HUD landlord in W. County. There will need to be an inspection and he is negotiating the rent…. As soon as we get Aaron’s roommate, we will be applying for three people and a 3 bedroom subsidy (Aaron, roommate and caregiver.) This is what Aaron has had in our past County for the last decade, so I think this should be pretty cut and dry. It is an accommodation under ADA, but is different than the rules for HUD’s definition of “caregiver.”
We have received HUD extensions until Oct. 31st. It has been a lot of running around between counties, but Debbie and Wendy have both been wonderful caring professionals. Thank you for helping me figure out the system.
Notices
I need to give notice to everyone in our current county and the current provider by Oct. 1st, which is fast approaching.
I’ve given the notice about moving to Aaron’s current landlord.
This will not come fast enough. Aaron had another “unusual incident” last week where he was not groomed for his day program. (The food he got in his hair on Monday was still there on Wednesday—the staff felt he had not had his hair washed in two days and it was dirty and grimy.) Also, Aaron is running out of transportation money to his day program.) Tom and I are taking Aaron up on Monday mornings, and usually picking him up one afternoon a week.
House Remodeling
The director of the non-profit says they closed on the house last week and will begin the remodeling shortly. They are starting with some tree trimming because of the possible danger and then will refinish the floors in the Living Room, Dining Room and move on to the bathrooms. If everything works out well with HUD and we get the caregiver’s designation for the third bedroom then there may be enough rent money to justify new windows (the current windows are casement windows—inefficient and BAD). They are reluctant to begin the bathrooms until we know who the second roommate will be. This makes sense if we want to make accommodations which are specific to the person needing the bathroom.
I think this is a great way to begin because we will want to show the community we will be great neighbors and take care of the house before the rumors begin that two men with intellectual disabilities are moving in. This is what worked on Aaron’s current residence and I have too many memories of Stetennius, Five Mile and other hearings from worried neighbors. It is a mature neighborhood, I don’t expect any problems, but we want to make a good first impression.
Tom and I will be planting some mums and have a couple inexpensive porch chairs to make the place look lived in. The house has been vacant for a long time so a few improvements should impress the neighbors.
Potential Roommate
I am hoping to hear from the parent of the potential roommate today, and then can set up some visits. This is the next big step.
Then, I understand from the new county board, we will finally get a case manager.
Transition for Aaron
We have been driving Aaron by the house and telling him it is his new home, but I can’t imagine he understands what we are talking about. I’m worried he will miss his roommate of the past 13 years and am sure he will be confused. I want to start some visits to the house as soon as possible. The more familiar he is, the easier the transition.
I’m hoping he will get to have a couple meetings with the new roommate and new staff as soon as possible.
Furnishing House
We also need to figure out how to furnish the house. I have begun to take donations from relatives. We probably have about $1000 set aside.
Tom and I furnished Aaron’s first two residences. We are told that if the furnishings belong to Aaron he can take them with him, but I am uncomfortable just taking the silverware out of the drawer and telling them, “Sorry, this belongs to Aaron.” We have enough problems with the current staff as it is and we don’t want to cause problems for Aaron’s current roommate. But, it is expensive to start a new house from scratch.
My family will be having a shower to donate items sometimes this month. I will have to coordinate with the director of the non-profit when we can get a key and get into the house and it’s not a Bengal’s game (if there are any Bengal fans left in Cincinnati by then).
I’m hoping we can set a corner of the garage or one bedroom to begin collecting items.
I began with a couple boxes in Aaron’s current residence and the staff (without permission) gave them away. “What would you do? Case of trash vs. treasure”. (I’m still VERY upset about this. Just add it to the list of why I want to get away from them ASAP.)
New Agency
Next week I will begin interviewing residential providers. They will need to hire and train staff by Nov. 1. We have met 3 different providers as we visited the 3 potential placements for Aaron. One company impressed us because it was a local company in Mason, but we are open to suggestions. Please email me ASAP. We are well aware that just because a company was good last month, doesn’t make it good this month. Having caring staff will be the second most important variable, after a good roommate.
Well, we have a busy week ahead. Please say a prayer we sell our condo, it is a huge strain on us. We listed it with another agent last week. We have begun to move some of our things into our new condo.
I’m hoping by Christmas we can look at both Aaron and us in our new homes and know we are in a better places, but GEEZ, it’s going to be an action packed couple of months.
Thanks to everyone for helping make this happen for Aaron. Maybe the Bengals could learn from all our teamwork 🙂
Any questions please let me know. Have a great week. Mary
About 1:00 PM, the mother of a young man who might be a prospective roommate called on the phone. That went well so we picked up Aaron at his day program and all met for dinner in a local restaurant.
Email to same group at 9PM.
Tom and I always felt one of the most important steps was finding a good roommate for Aaron. We think we have found a good match.
Aaron, Tom and I had dinner with Jim and his mother, and it went very well, so we would like to move forward.
Jim was very friendly. He is the kind of person that hugs everyone and is best friends with everyone in a couple minutes. He has a devoted mom. Aaron kept looking at Jim. I wish he could speak and tell us his thoughts, but he seemed happy. Jim likes to swim and go to King’s Island—both things that Aaron liked to do in the past. Hopefully, they will be able to do many activities in the community.
By Providence, or some divine plan, or dumb luck…Tom and Jim’s mother actually taught at the same school together and used to talk about their kids at lunch. Pretty amazing, eh?
So, if everything works out—drumroll please– Aaron and Jim will be roommates.
HUD
Jim’s mother is going to call Wendy at the HUD office tomorrow and see what we need to do to get Jim on Aaron’s list. So we will have 3 bedrooms and Aaron, Jim and the caregiver will make three. So, hurrah hurrah.
Also, yesterday the non-profit started painting rooms and beginning the process to get the house HUD approved. So we are really moving forward. It is hard to believe—this is going to happen.
Medicaid Waiver
Aaron and Jim both already have Medicaid Waivers at appropriate levels. So we can begin the transfer of Aaron’s waiver to our new county and start interviewing residential providers.
Finding a good staff will make our miracle triangle complete: (House/HUD—roommate—staff).
Furnishings
My sister Janet, visiting from Kansas, had a friend donate our first items for the house. The director of the non-profit allowed us to begin to put them in the garage.
The painters were there to let us in….
Today went so well, I think I’ll go buy some lottery tickets. 🙂
Thanks to everyone who is helping us climb our mountain and move forward. It takes a village….
Mary
Keep Climbing: Onward and Upward
All my best,
Mary
Comments:
Hope you’ll share your thoughts and experiences. I’m happy and exhausted and I know we are only about half-way on the move-in journey. Whew! Now on to making a task analysis for tomorrow. Whew! Whew!
This is the third interview in their series on Inclusion. The interview is about 20 minutes long. I hope you will leave comments here, talk to your friends and use your social media to spread the word on Twitter, Facebook, Google Plus, DIGG….
My Brief Biography:
Like many people, I began my journey into Disability World when Aaron, my oldest son, received his first label of autism and intellectual disability because he didn’t reach the developmental milestones.
Fortunately, Aaron was born right as PL 94-142 (The Education of All Handicapped Children Act—the precursor of IDEA) was passed. He and Neill Roncker were the first students with severe disabilities to go to Cincinnati Public Schools. Neill’s case (Roncker v. Walter) went all the way to the Federal Supreme Court, ours was resolved locally because the school district didn’t want a class action lawsuit.
I was fortunate to learn about inclusion from the people at TASH (Equity, Opportunity and Inclusion for People with Disabilities–formerly The Association for Persons with Severe Handicaps).
Most of my life was spent as a mom and advocate. When Aaron moved into his own house, I went back to school to get my masters and doctorate degrees in special education at the age of 50. I taught at Miami University and am still fighting the good fight for adult inclusive services for my son who is now 36 years old.
We’ve had some success stories that warm our hearts, and we work every day to make Aaron’s life more inclusive. We are currently working to move Aaron closer to our home.
Questions:
1. Roncker v. Walters was the first court case under the Education of All Handicapped Children Act to go to the Federal Supreme Court about the Least Restrictive Environment. What effect did it have on what we now call inclusion?
Neill Roncker and my son Aaron both lived in Cincinnati Public School District. Neill was a year older than Aaron.
In the 70s, Ohio had a policy that children with IQs below 50 were automatically excluded from the public schools and sent to the segregated schools for children with severe intellectual disabilities. It took several years, but finally the Federal Supreme Court ruled Neill could go to public schools and services must be PORTABLE.
“In a case where the segregated facility is considered superior, the court should determine whether the services which make that placement superior could be feasibly provided in a non-segregated setting. If they can, the placement in the segregated school would be inappropriate under the Act” (Roncker v. Walters 700F.2d 1058 6th Circuit).
For instance: if the segregated school provided speech therapy, that same speech therapy could be portable and provided in a public school.
Since Roncker there have been many cases on “mainstreaming,” “least restrictive environment” and “inclusion.”
The court sometimes makes conflicting decisions, but the bottom line is the decision must be made on an individual basis (thus the reason for the conflicting decisions) and must ask the question: “Can the services in the segregated school/class be provided in a general education school/class?”
Remember in the 70s-80s, we were just trying to get our children to be considered: “persons”; “capable of learning”; “potential employees” and to be allowed to go in the door of the public schools.
The term “inclusion” had not been invented yet.
The Roncker case was important for many reasons: it showed the congressional intent of education in the least restrictive environment; the rights of parents to go due process; and the courts responsibility to hear the evidence in education cases as well as consider class action lawsuits. The question of costs was also to be a consideration. These were critical milestones which affected future cases like Daniel R. R., Timothy W. and many other cases.
To avoid a “class action” case, Cincinnati Public Schools settled on Aaron’s case after we won our first due process hearing. Aaron was allowed to go to a public school. Long story, but my husband was a teacher in Cincinnati Public and because of harassment for Aaron and our family, we moved to another school district a year after we won the right to go to public school.
2. Can you share a couple of those Aaron success stories?
Our family researched the 5 counties in our area which included 3 states. We found one school district where both our children could go to the same school. After our three year battle with our school district and hundreds of confrontations with angry parents and teachers, our first success story was on Aaron and Tommy’s first day in our new district.
The yellow school bus pulled up in front of our new house and both our boys got on the same bus to go to the same school. No bands playing, no angry protestors, just four neighborhood kids waiting on the corner.
One young man who was about 9 years old, who had known Aaron for all of ten minutes, reached out his hand to help Aaron get up the steps of the bus. No one asked him–no one gave him an inservice or lecture on attitudes toward people with disabilities–he just instinctively gave Aaron his hand to boost him up.
That was when I knew Aaron was going to be fine. A helping hand–isn’t that all we were ever asking for?
Aaron and Tommy attended school together for almost their entire educational experience. Tommy is one of the most sensitive caring people I know and is now a radio frequency engineer with Sprint. They shared many activities together.
Aaron participated in inclusive social, emotional, some academic and after-school activities: Boy Scouts, the prom, the junior high dance, track/cross country, chorus, the environmental club, Friendship club, bowling, work study/vocational job club, and many other school activities. On my blog, I wrote about the graduation ceremony (link below).
If you want more information about A Place to Learn, check out the Parallels in Time 2. It is wonderful.
3. When you were teaching the “inclusion” courses at the university, what did the education students think about inclusion?
It was interesting. Most of the university students who went to school with people with severe intellectual and developmental disabilities couldn’t understand what the big deal was. The students who came from private schools where there was no diversity, were confused and uncertain how inclusion could work. I’m hoping my class made a difference, I’m hoping the next generation of students will have the learning opportunity to be voters, friends, neighbors, co-workers and bus riders with others who are different from them. As our world becomes more diverse, this will be a critical life lesson.
4. Some school districts call a school an “inclusion” school and all the students in the school have IEPs. Does that meet the definition of inclusion?
NO! Some school districts just make up their own definitions. Other districts “dump” kids in classes with no support services. Last year I went to supervise student teachers in an “inclusion” school and was shocked that everyone in the school was on an IEP. Check out Michael Giangreco’s article and terrific comics: “Moving Toward Inclusion.”
5. Why do you think inclusion is a civil rights issue?
The reason we have the term inclusion is because we have had exclusion, segregation and inequality. Senator Lowell Weicker said, “As a society we have treated people with disabiliteis as inferiors and made them unwelcome…”
If you have any doubt, check out Parallels in Time I ” a website on the history of people with disabilities.
In Brown v. Board of Education (1954) “separate is inherently unequal” says it all.
Check out “What is Inclusion?” on my blog ClimbingEveryMountain.com and see Aaron and Tommy in their graduation pictures.
Share some of your inclusion stories and let
us know what you are thinking. Will you listen to other interviews on The Inclusive Class? I’ll pass on your ideas to Nicole and Terri.
The Disability Shuffle: Two steps forward, one step back. OR, One step forward, two steps back…. The frantic drumming of time passing pounds in your ears as you shuffle and twist and beg others to listen and join in your dance of survival. “Can I keep up or will I fall and break my neck?”
As you straddle the wall between Normal and Disability Worlds, you wonder, “I’m dancing as fast as I can, but is it to my own song, or am I merely a puppet dancing on the professional’s strings?”
This is the 10th post about our attempt to bring our son with the label of autism home to the county where we live. Over the course of a year, this is about the 500th action step we have taken to try and make this happen.
Today I have good news and bad news.
GOOD NEWS
One of the local non-profits is willing to purchase a house in the city where we live.
According to the policies of HUD, parents and family members are forbidden to own the houses.
This non-profit has been around for a long time and will likely be solvent. Aaron has lived and rented one of their houses in B County for the last 13 years. They do a good job.
They are willing to get the house HUD approved and Aaron would be able to use his “housing choice voucher” to become the head of household and rent from them. This voucher is also good for any roommate Aaron would pick.
Aaron could live in this house for the rest of his life. The non-profit said they would let us be involved in the process of finding a home. It could be close to where we live, so we could stay active in Aaron’s life and watch over his care and the unpredictable staff. Since we would treat this home like our own, we pledge we would be good stewards.
Finding, Purchasing, Renovating, Furnishing and moving in will take time. And we are already on our second 30 day extension in the HUD timeline. Ouch, only 60 more days.
Since Aaron would use his HUD voucher for himself and another person, this would be a long-term solution which would help costs in the new county.
HUD HOUSING PROBLEM SOLVED. Right?
With creative problem solving and resources in Disability World, we could meet the criteria set up in HUD Regular World. (Another time we can talk about how HUD Regular world, might be another parallel universe from Normal World.)
EXCEPT
The County Board of DD must give their permission for the non-profit to come into the county and be willing to work with them. I don’t think this is any law, just good business practice.
BAD NEWS
Each county sets up their own non-profit to rent the houses to people with disabilities.
Some of these use HUD Section 8 rent vouchers,
Others just have the people pay the full rent, and
Some have their rent subsidized local county funds.
Each County is Different.
The non-profit housing agency in B County is pretty independent of the board.
The non-profit in W County is run from inside the county offices.
Same mission–to provide affordable accessible housing–totally different structures.
B County uses many HUD vouchers; W County uses rent subsidies from local funds.
Aaron and the people with disabilities I am talking about are among the poorest and most vulnerable of Americans. They have labels of physical and intellectual disabilities, autism, developmental disabilities that started before age 22. Many have no family or others to help them at all. Each county tries to keep the rent at 1/3 of the person’s income or social security check–which is around $120.
Everyone knows there aren’t many places to rent for $120. Even with a second roommate that is only $240. If you add the special accessibility needs—well, you get the idea. People with disabilities are going to need some sort of rent subsidy to live in any decent house or apartment.
Our new county’s housing non-profit does not have the funds to buy any property in our city (the largest one in the county). They have most of their property in the county seat, which is centrally located to the county, but not to the population. I wrote about the one property they do have in our city in Part 8| Roommate hunt continues Medicaid Waiver Style
and Part 9| Should I rent a billboard? So, bottom line.
Our new county is “thinking” about accepting the offer but it has to go up the food chain. It is a bureaucracy and even if it is a good bureaucracy, there are staff who go on vacation, go to conferences, have babies, use personal days, and have full agenda’s that don’t include Aaron Ulrich, someone who currently isn’t even in their county. YET?
So we wait. And wait. And pray that we will be able to meet the timeline. We keep dancing on the wall.
And maybe they are hoping if they keep us dancing long enough, we will wear out, and exhausted we will give up and stay where we are. Not bother them in this new county.
But Tom and I live in W County. Have for 12 years and plan on being here for the rest of our lives.
Friday we got a notice that the Director of Aaron’s Day program resigned suddenly. We LOVED this director. She put her heart and soul into developing this new day program in our new county.
So, Aaron loses his good friend and a competent professional who loved him.
As it looks like we might be solving one problem and be able to add one card to the residential domain of Aaron’s life (God willing and the creek don’t rise) another card in the vocational domain collapses.
So be it in the life of a family of people with disabilities. And when this HUD Housing Card is in place, then we get to continue the search for a roommate who has a Medicaid Waiver and who would want to live with Aaron.
Hey, wonder when families will get a break and be able to go on vacations, take personal days….?
One step forward, two steps back… The Disability Shuffle continues.
Comments:
Does this make sense? Does your county have a non-profit board for housing? Does your family member have a HUD or other rent subsidy? If so, who owns the house? Today I’m going to concentrate on the hopeful promise of the non-profit and pray it works. What hopeful promise are you praying for?
