Training Centers & Intermediate Care Facilities: How do we value people with disabilities?

Have you heard about the Department of Justice investigations into Virginia's institutions (aka Training Centers), and Intermediary Care Facilities (ICF)? Are you aware of the abuse and in some cases, even murder that goes on in these secluded places?

FACT: It's three times cheaper to care for a person with a disability in their home.

Currently Personal Care Aides (PCA) aren't paid more than burger flippers at McDonald's. They do not receive any type of benefits.
However, the staff in state institutions and in some Intermediary Care Facilities earn three times more as home PCAs. 
These PCAs should be seen and be treated as having serious career. They assist in executing the Olmstead Decision, which states people with disabilities have the right to live in the community.

Here's the crux of the problem: Money won't make people care like a mother. Nobody cares like your mother. 
But I do think an adequate paycheck and benefits would up the quality level of care. A higher pay grade would mean more hoops to jump through in school. It would weed out the people who really don't care.
How do you teach people to care? You can't.

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I believe there's a direct link between the marginalization of people with disabilities and poor quality PCAs providing the care.

If people with disabilities were valued more, money would allotted in the budget. The more money, the better quality of people providing the care.
The money is there in the budget, trust me. 
Expenditures involving people with disabilities are first to be cut in budgeting partly because they are seen as a non-contributing group that needs to be constantly taken care of. That is the current sad perception of people with disabilities. This perception can be changed. More people with disabilities could be employed if more businesses were opened minded. Employment coincides with inclusion in school too.

Due to the severity of disability of ICFs residents, part of what I just said doesn't apply of course.
Still, if community living were valued and if the standard practice of shipping your family member away to be cared for as the only/best option came to an end, ICFs and institutions may not even exist. 
Full circle, if people with disabilities weren't marginalized as they are these ICF horror stories wouldn't be happening.

Truth be told, money and providing disability services do not mix. It's a perfect situation for corruption and abuse. So in reality this blog entry is all hot air. A lot of blogs are nothing but hot air, so just add this one to the pile. lol! :)
Why can't we all just care for one another?

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Prototype - Touch Screen Mouth Stick for iPad by iFaraday

I want to tell you about an awesome item iFaraday custom made for my mini iPad! It's a touch screen mouth stick with an U shaped mouth piece. 

I can find no other iPad mouth stick out there with an U shaped mouth piece. It is exclusive to iFaraday!

I'm so glad iFaraday was able to work with me to create this product. They not only designed the U mouth piece but made the stick the length I needed! They also were able to angle the end of the stick so that it's similar to the mouth stick I use on my iMac.

The best part about this new product is that it's affordable! I see a lot of these assistive technology iPad mouth sticks go for $50. This mouth stick was around $20! Half the price!

Please help me spread the word about this new piece of assistive technology for people with disabilities, share this blog. Thanks!

Go to iFaraday's Store HERE

People with Disabilities and the Republican Party – Election 2012

If you were only looking at the presidential debates in terms of people with disabilities, here's how it added up:

Obama mentioned either people with disabilities, or disability issues around four times. Each time he did so, it was in a positive light.

Romney only mentioned 'the disabled' once. (He couldn't even use People First Language as Obama did.) What added to the offensiveness was when he said something like, “The disabled will always be taken care of.”

Fuck that! I don't want to be taken care of, I want a job!

The party who preaches that the government and tax payers shouldn't help people can can help themselves, are such hypocrites and/or out of touch with people with disabilities!

I can help myself, I can be employed. In fact, I am employed with Moms in Motion. A Medicaid Waiver Facilitator.

I wouldn't be a so-called drain on society if more focus was given to education and employment for all. But inclusion of students with disabilities in school doesn't seem very important to this country. It's all about seclusion so we can provided services to 'help' them. Services that the Republicans distain and want to cut. If there was more inclusion, many of these services wouldn't be needed!

It's extremely offensive to me, a person with a disability when I hear I “need to be taken care of” and then to hear that I'm a “freeloader” that is dependent on the tax payers that work hard for their paycheck!

I'll give you a need....

The Republicans need to get with it on so many issues. They are so out of touch with so many Americans.


P.S. People with disabilities are the largest minority group in the US.

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A report by Youth Transitions Collaborative
Power in Numbers: A Profile of American Voters with Disabilities
July 12, 2013



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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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