Ms. Wheelchair Virginia --- March 16th - 17th 2012

Thank you to all the volunteers and Americorps, for without you this event could've not happened! Thank you!


I'm so not the pageant type girl, but I told myself when I saw a opportunity for people with disabilities I MUST do it. I was hoping since I didn't have a college degree, that with Partners in Policymaking under my belt that would be a good time to try for Ms. Wheelchair Virginia. I also thought it would be a great way to meet new people. By the end of the weekend I realized my desire to socialize, might be the death of me. LOL!


I'm so glad I have this as a life experience now, but I wouldn't do it again for anything! My mind loved being challenged but my Cerebral Palsy couldn't take the anxiety. It took me a good two weeks to unwind! For that reason alone I was relieved to not be crowned Ms. Wheelchair Virginia 2012.


The event was held at Woodrow Wilson Rehabilitation Center. I had been a CAD drafting student there 13 years before. To put it mildly, it was strange to be back on campus. I had many flashbacks. A few even stopped me in my tracks and alarmed my mother, “Ivy, what's wrong?” I found my anger towards the place had subsided a bit. After all I still had my friends and main squeeze in my life, all of which I had met at the center. My mother was hit by the same thought I had all those years ago, “Ivy, how did you stand this place?” We were only there two days and she saw IT. LOL!


I'm not sure if I had a hard time eating because it was the same institutional slop I had to force down for two years, or if was my nerves. I couldn't believe I was betraying a promise to myself and eating that again. At least there was another contestant there to 'bellyache' with about the food. Angela also had gone to WWRC. We just could not believe we were eating that mess again. LOL! I cracked myself up by thinking during the big, final, celebration for the newly crown WMVA that these girls might not be eating to fit into their gorgeous dresses and here I was  I JUST COULDN'T EAT!  I also found it amusing shoes give women so much pain, I don't even walk and my shoes I wore that night gave me sores! Yet one thing we women have in common is we love our shoes, no mater the level of uncomfortableness. 


The time backstage with all the ladies was the best. I loved how that part was inclusive. All the Ms. So And So Counties where there to help the six of us. It was fun to sit back and watch those young ladies interact with the chaos that IS backstage. At one time two Little Misses were helping get things of the floor. They bent down at the same time and their tiaras clashed together. They just giggled. I thought it was the cutest thing. Even though we were glammed up too, it was a tad intimating to be surrounded by all that beauty. My thoughts, “This is so not my thing, I'm a surfer girl!” 


I met some wonderful people. Jane, our coach awed my with her story of being stuck in an elevator during a blackout in NYC. What strength she has. I was impressed to hear she's slowly easing back into riding elevators. During our glam session before the stage event we ladies had a room with stations set up, hair, nails, wheelchair cleaning. It felt like that scene in The Wizard of Oz! My favorite part of the entire weekend was the facial station. It took me awhile to take in just how she got it done, but the woman giving us all facials was blind! It floored me! Of course she knew where exactly the tubes where laid out on the table, but I wanted to know how she wasn’t tripping over my chair? I noticed when she was doing the others, she was using her feet very carefully to mark to herself where our chairs where sitting. I let her knew how I impressed I was with her abilities. Last but not least I met Rose. Rose and Ivy. LOL!  She had been Ms. Wheelchair Virginia 2008. She is an older woman with CP similar to mine. She seemed to be tickled with me and told me a few times that I remind of herself at that age. Rose is a talker like me. I instantly connected with her. I hope to visit her soon without all my nerves from that weekend. Oh and Angela, who lives 15 minutes from me but it took an event in Fishersville VA for us to become friends. Life is a trip!


There were PT/OT students there to help us from JMU. They were a welcomed bunch as far as I was concerned. They helped me into my dress. I wish they were able to come back with us to the hotel room. We sure could've used the help. My mom is amazing. She is there for me. The other contestants seemed to have lots of help there. It was just mom for me, and physically it was extremely difficult, which is another reason why I would not do Ms. Wheelchair Virginia again. Fundraising was easy-peasy for me, so everybody knew this event was coming up. I also sent out a facebook event camouflaging the event as an excuse to relax in the mountains for a couple days. Still nobody came out to support my mother and I. Brian would've came but they made it sound like they just wanted friends and family there for the event on stage and the dinner. 


My second favorite part of the weekend had nothing to do with Ms. Wheelchair Virginia. Terrible of me, I know. LOL! We visited my favorite record store, Crossroads and stocked up on yummy snacks at The Cheese Shop. If you are near Fishersville, Waynesborro, Stuarts Draft, look those up! My mom wanted to go on to visit the cherry blossoms that were in bloom in DC but I threw a fit. Sorry mom! I was such in a bad state, physically after the event I needed to go home.


I was thrilled and relieved Stephanie Copeland from Richmond VA was crowned Ms. Wheelchair Virginia 2012! She and I quickly became friends. Angela who was announced Ms. Congeniality of the group, continues to make me laugh and smile and I'm so glad to call her a friend. All of the ladies I shared the stage with are incredible and have tremendous strength. I love them all!


Note: We had an interview with a panel of judges, create a life display board, answer two taylor-made questions from the judges on stage, and give a speech on stage.
Speech: Why the disabled community needs to bee more unified
I'll paraphrase the questions because I don't remember. Who in the disabled community would you like to met? Judith Heumann Told a little about her leading a sit in in the 60's for disability rights. What's your favorite musical instrument? Electric Guitar. I makes feel blah blah can't remember, but I did squeeze in babbling about my favorite band. Hahaha! My favorite guitarist is Mike McCready from Pearl Jam!


Facebook chat and well wishes: HERE




Professional photography done by The Highlander Studios: WEBSITE


A few Ms. Wheelchair Virginia 2012 Program Pictures: HERE




Ms. Wheelchair Virginia 2012 is Stephanie Copeland: WEBSITE





mswheelchairva.com


americorps.gov

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Nonexistent Grandfather Clause in the ADA

Please share this note, and share the knowledge. I'm sick of the lawsuits and inaccessibility because people want to argue about the so-called Grandfather Clause.

there are grants businesses can apply for towards accessibility at sba.gov

"There is no Grandfather Clause in the ADA."

It looks like there is a lot of confusion about the distinction between the ADA's requirements related to new construction and alterations vs. requirements related to existing structures, and additional confusion about the distinctions between Title II (which covers state and local governments) and Title III (which covers many types of private businesses).

Section 12183 is the section of the original Act that established requirements related to new construction and alterations under Title III. (Other sections establish similar requirements for state and local governments under Title II.)

The section of the law that establishes the obligation for public accommodations covered by Title III to address accessibility in existing facilities by removing barriers when it is readily achievable to do so is 12182 (not 12183), specifically 12182(b)(2)(A)(iv); it basically defines "discrimination" to include "a failure to remove architectural barriers, and communication barriers that are structural in nature, in existing facilities ...  where such removal is readily achievable."

It should be noted that commercial facilities, which are also covered by Title III, are not subject to the "barrier removal" requirement, only to the requirements related to new construction and alterations. Commercial facilities are private businesses that are not open to the general public. They are generally places where people work but are not open to customers - places like warehouses and factories.

The obligation to ensure access to programs, services, and activities of state and local governments that are offered in existing facilities (commonly referred to as the "program access" obligation) works a little differently and is based on the concepts of the Rehabilitation Act of 1973 and its regulations.

You can find the ADA itself (the statute) online at http://www.ada.gov//pubs/adastatute08.htm, and the regulations for Titles II and III at http://www.ada.gov//regs2010/ADAregs2010.htm.  I hope this is helpful. Please feel free to contact our office if you would like to speak to an information specialist. --

 Mid-Atlantic ADA Center
401 N. Washington Street Suite 450
Rockville, Maryland 208501-800-949-4232 V/TTY301-217-0124 V/TTY
WEB: www.adainfo.org


This information is intended as informal guidance and assistance and should not be considered legal advice or binding on any agency or entity. Please consult an attorney for legal advice.



In summary:
The only entities not subjected to ADA accessibility standards are Churches and commercial facilities such as factories and private businesses that are NOT open to the public. But commercial facilities are required to follow ADA standards in new construction and in remodeling.

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Tax Incentives for Businesses (ADA)
http://www.ada.gov/taxincent.pdf
http://www.ada.gov/taxcred.htm

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Series: Top 10 Misconceptions About Title II And III Of The ADA

My letter to Judge Gibney asking for court support of the DOJ agreement to close Virginia's institutions

I mailed this on 4.2.12 because 4.6.12 was the deadline for public comment to Judge Gibney. I wonder how many letters he got?

Please support the DOJ agreement - right to live in our community



Dear Honorable John A. Gibney Jr.,

I'm a person with a disability that has lived in the community all my life. I have friends. I do activities in the community. I went to public school along side my non-disabled peers. I feel institutions are holding me back even though I have never lived in one. (and in order from me ending up in one, I demand that all Virginia's institutions be closed) The Olmstead Decision says I have the right to live in the community. Living at home saves the government money, because institutions cost three times as much to care for one person. I'm appalled the institution in Chesapeake is still open. There are thirteen states with NO institutions for people with disabilities, I want Virginia to be next on that list. Make home support stronger so people can receive quality home care in their communities.
Keeping institution staff employed and/or fear of weak home support is no reason to keep people with disabilities from their right to live in their community!

Regards,
Ivy Kennedy
Disability Rights Advocate


UPDATE: On 6.8.12 Judge Gibney ruled in favor of the DOJ agreement. I was there to hear the events in the courtroom! Read news articles and my opinion: HERE


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State Budget Hearing - 1.6.12 - Medicaid Waiver

Video: HERE

It's a pleasure to be here today. My name is Ivy. I've been using the Medicaid Consumer Directed Waiver for over a decade to live in the community. Medicaid pays my personal care assistants. The waiver assists me to give back to my community by volunteering, going to school, and getting a job.

It is three times cheaper to care for somebody in his or her home than in an institution. Virginia spends $250,000 per person annually to keep just one in an institution. If the state is really serious about closing institutions, and to see people with disabilities living independently and wants more of those individuals in the workplace, personal care assistants need to be paid more and given benefits. This will secure PCAs as a serious career field and increase the quality of care, which will eliminate a huge barrier to me and others.

Virginia can save a considerable amount of money by complying the Olmstead Decision of 1999, which states people with disabilities have the right to live in their community rather than segregated institutionally. People with disabilities should not have to wait to have a Personal Care Assistant. Long waiver waiting lists that Virginia currently has could force people into institutions, which is the exact opposite of what the state is trying to do.

The current budget allocates $262 million each year to fund the 5 state institutions. Virginia is one of only 10 states that haven’t closed a single institution. A big key to closing institutions is ending the waiting list for waivers so there can be care at home. As I said before waivers are three times cheaper, so what are you waiting for? The money could be used for issues talked about about today like education, mental health services and transportation.

This state is ranked 48th in the country for its community-based residential services for people with disabilities. That is shameful. I hope you act now to make Virginia a state we all can be proud of.

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Virginia Employment First Summit - Virginia Beach October 4-5 2011

First I'd like to say, I'm grateful to have gone. The ARC gave me a scholarship. It was good to hang out with friends I don't see often and awesome stay in an ocean front room. As a self advocate I was urged to attend even though I was reluctant to go. Turns out my icky feelings were justified.

The summit did not renew my faith in employment for people with disabilities. My same opinion was firmly held in place; All the agencies (the service system) finds jobs for people with disabilities. If all people with disabilities had jobs THEY wouldn't. So at the start it's flawed.

I had been out of that loop for over ten years and it makes me furious to see 'they' are still spewing the same bullshit! Though there were good concepts sprinkled in here and there. Even my personal aide who knows nothing of that field pointed out twisted policies she overheard. I'm grateful I was able to give a bit of my opinion but just know I had to bite my tongue a lot!

One example of a backwards policy they were talking about was the concept of paying a co-worker to help the person with a disability on the job.

Who wants a friend that's paid for?

Not enough self-advocates were at the summit. The people who were there were on the same side of 'the game' patting themselves on the back, blowing hot air, and painting pictures of happy unicorns flying over rainbows. Who was missing? EMPLOYERS.

Inclusion in the classroom and teaching awareness and rights (in school curriculum and at businesses) was mentioned a little but not enough, which DO effect employment so much I believe. No talk of changing people's perception of disability, which I think is the linch pin to everything. It also seemed backward to me, no talk of inclusion in school but then 'they' expect integrated employment to just happen? Good luck with that!

Another thing that bothered me was somebody said, "Go find a person with a disability who wants to work and then go back to your network and find them work."

NO! Your network is not my network. Swamping is not going to work. Every person alive needs their own social network to draw from. If you're being PAID to refer people it takes the creditability out of it. Right?

Inclusion in the classroom will build social network. Segregating kids with disabilities has to end for many reasons, but simply for the reason of employment. In the real world for anybody many jobs are found by social networking.

There was hardly no talk of college at the summit which made me mad but they talked about person centered planing and about setting goals early in middle school which will cover college for some students with disabilities. If person centered planning is done right it will bypass putting people with disabilities in convenient, over used job categories. These present categories are so limiting and demeaning. As some call these categories the three f's: filth, food and flowers. I realize some people with disabilities can only do these, but we all don't have to! Really if you're creative about it ANYBODY with a disability can do jobs way beyond the three f's. Rather in employment or education, the expectations need to be raised for people with disabilities.

Tax dollars are paying for this, a twisted broken service system! The employment summit meant well but the people there are not thinking straight. I felt very out of place. Wait, am I the crazy person here or are they? I had that same feeling years ago when I was wrapped up in employment services. It is NOT a good feeling.

UPDATE 10.18.11: Kathie Snow author of Disability is Natural featured this (stay out of job services) on her 'Your stories' webpage Here

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Disability History and Awareness Month public comment to school board

I spoke to my local school board on 9.20.11 Here's my speech.

The biggest barrier facing people with disabilities is not something you can touch. Can you guess what it is?
It's people's attitude towards disability. I hope we can all agree that kids are more open minded than adults. Kids minds can be molded to have different perceptions very easily. Which is why I'm asking you to recognize October as Disability History and Awareness Month in schools. Awareness is important but I feel that you can't necessarily teach someone how to feel towards one another. Though by teaching about the history of a group it will lead to respect, compassion, understanding and breaking stereotypes about people with disabilities.

By teaching this to the younger generation it would change the future of people with disabilities. The awareness would also improve the future of everyone in the community. When a person knows more and is more educated the community can't help but benefit from this knowledge. It would lead to including everybody in the community. No more leaving one out or shunning them due to the fear of the unknown.

Virginia has a resolution designating the month of October as disability history and awareness month. There is a ton of curriculum published online for teaching disability history and awareness. I also have a lot of these links listed on my website ivykennedy.com

Teaching in schools as part of our history curriculum, the history of the disability rights movement and about the positive impact people with disabilities have had on technology and society, IS necessary. Teaching the history of other diverse groups in our school systems, has been proven to have a positive impact on the group and society as a whole.

Even PBS is getting in on it. On October 27th they are airing a documentary about the Disability Rights Movement.

Just think about it, nearly every group that has fought for their civil rights are mentioned in school textbooks. Why aren't people with disabilities? Please teach disability rights and history in all classrooms.

Senate Resolution for Disability History and Awareness Month HERE

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Why current perceptions and policy on disability are horrible for the economy

You don't see it in the press much. When cable news network argue about the budget, it's never mentioned. Yet it plays a huge role in our nations economy….. the disability unemployment rate. I believe perceptions about disability play a huge factor in the disability unemployment rate. I realize there's many other facets to Disability Economics other than employment. This blog entry is just the tip of the iceberg.

Bottom line: When it is financially smarter to sit at home rather than work, something is terribly wrong.

There are many ways to change perceptions about disability. A few are: Ask your school to do something for Disability Awareness Month which is October. Molding kids perceptions would be a huge step forward. Read up on disability history. It's out there and (and until recently) it's not too hard to find, though still it's not in most school books. Advocate for Inclusion..... for students with disabilities to be in your child's classroom. I believe when kids are taught together no doubt the disability employment rate will improve.

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Published around the time of ADA's 20th anniversary

It's All About the Money by Bruce Blower

"Little more than two decades ago, once the U.S. Congress realized that it cost taxpayers almost as much as this entire nation’s defense budget to keep disabled persons at home on entitlements, out of the workforce passage of the ADA federal law became a sure bet. Congress had also then seen a Harris poll stating overwhelmingly that disabled people wanted to work."

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People with disabilities DO NOT COUNT.

The US national unemployment rate does not factor in people with disabilities.

What Is the REAL National U.S. Unemployment Rate – Why the Numbers Can Be Misleading

by Kalen Smith

"What’s most surprising is that the existence of this last group is completely ignored by the unemployment rate."

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A reverse twist on medical insurance

September 11, 2011

By Monica Yant Kinney, Inquirer Columnist

philly.com

"I want to work. I'm meant to work . . . but I'm being held hostage by a system that does not want to see me succeed," Curran tells anyone who will listen - a group that so far includes two state legislators, scores of state welfare officials, and a half-dozen advocates equally baffled by his dilemma.

Here is a young man eager to get off Social Security disability and become a productive tax-, rent-, and copaying member of society. And the government's trying to stop him?

This will be a waste of taxpayer money if he doesn't work," gripes Sen. Daylin Leach (D., Montgomery), who intervened for his constituent. Leach called the catch-22 "one of those boneheaded government policies" in dire need of a fix."

Long story short, when this young man switches over to his job's insurance the home care services won't be as good as it is on state services AND there's a wait list his name will be on the bottom of, meanwhile no home care for him. When he earns too much money (by being employed) he'll lose the state run home care.

Sounds like perpetual poverty to me and tax payers are footing the bill.

Why can't this young man continue to have the same level of care no matter what insurance plan he's on?

In my case....

What type of careers would pay a decent wage for home care, the price of a powerchair, the price of home modifications, and the everyday bills? I'm no Smarty McSmart, I doubt I could swing it. If I took out a loan to pay an aide to go to college, I'd have that and college loans to pay back. That's only saying if I could get hired in the first place.

And this infuriates me!

Some political groups say,

"The hand outs have to stop! Screw the freeloaders!"

It's offensive in the context of people with disabilities! Some can work and want to work.

Where is the American Dream for people with disabilities?

So you're telling me, in a capitalistic nation people with disabilities are limited to how much money they can earn. WTF?!

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Imparato speaks on future of disability policy at University of Pittsburgh

www.aapd.com

November 4, 2010

"Though its drafters and champions envisioned the ADA as a road to independent living, equal opportunity, and self-sufficiency, we are a long way from achieving those goals. Twenty years later, we spend 440 billion dollars per year on federal programs designed in the 50s, 60s and 70s to warehouse—not empower—people with disabilities.

Today—20 YEARS LATER—our country still requires 18-year-olds with disabilities to prove to the government that they cannot work in order to get income supports and the corollary acute and long-term care coverage provided by Medicaid. That’s right, 20 years after the ADA, our public policy continues to force young adults with disabilities to retire.

Every time we do this --every time a young person ends her bid for success before it starts—a piece of our civil rights mission fails. Independent living, equal opportunity, and hope for economic self-sufficiency die. We spend 440 billion dollars per year on giving up.

We spent a lot of money implementing that law, but because we didn't deal with the definition of disability the program was flawed from the get-go.

If you spend years proving to the government that you can't work, and they turn around and give you a ticket and say, here, take this ticket and go get a job, most people are going to mistrust that and assume that the government is testing them to see whether they are really disabled. So because of the definition, you have a program that undermines itself.

Until we deal with the baseline flaw in the definition of disability all this other stuff that we do around work incentives is window dressing.”

The Philly.com and AAPD articles can be read in their entirety HERE

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Read the April 2012 Report by The National Disability Rights Network: Beyond Segregated and Exploited - Update on the Employment of People with Disabilities HERE

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Did you know if you live in the USA you can be penalized for saving money? If you're a person with a disability this can happen to you. Currently person with a disability can loose Medicaid if they save too much. In a capitalistic country, people with disabilities can't earn and save like most American citizens. Go figure. 
To put it into perspective, does everybody pay for a power chair and home care assistants? No! 
So why is the freedom to save money being denied for people with disabilities?

The ABLE Act is working to change this. Ask your delegate to support it. Read more about it HERE


You can not have more than $2000 in your bank account on the last day of each month. All paychecks, SSA payments are considered income, even when put into an ABLE Account.

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Tax deductions, etc for hiring…..

Some of this money is a YEARLY payoff. Businesses are fools for not taking advantage. 
Our government can not fix the disability unemployment problem. (and I don't expect them to) The government can throw all the money it wants into this Hire People With Disabilities thing, not a damn thing will change though until attitudes change.

http://www.dol.gov/odep/topics/TaxIncentivesForEmployers.htm

http://AskJAN.org/media/tax.html


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The ABLE Act passed in Congress!

On December 3, 2014 the bill passed the often-fractious House of Representatives, 404 to 17. 

On December 16, 2014 the bill passed the Senate as part of a bigger tax package by the only slightly less impressive margin of 76 to 16.


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At the Annual Meeting of the National Council on Independent Living in July 2014, a delegation of approximately 700 individuals with disabilities passed a resolution urging NCIL to push for a redefinition of disability as it relates to the Social Security Act.

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