Vanguard Landing, a choice or same pattern of segregation in Virginia?

I spoke a city council meeting 10.8.13

As a person with a disability and was once employed Moms in Motion, a waiver facilitator that assist many Virginians with disabilities live in their community, I'm confused and angry over the the expense and the intent the City has shown for Vanguard Landing.

While I realize people deserve home care options, I believe seclusion and segregation is never the answer. Those two factors are dangerous. If you were to look at the history of people with disabilities, you will find, again and again, a pattern of segregation and abuse. I'm not only referring to physical abuse but corruption of the internal care system that will surely happen in the future.

Why are we continuing to make the same mistakes of the past? Why do the founders of Vanguard Landing think this is best option, when the US Department of Justice came into Virginia and said the (secluded) Training Centers had to be closed immediately? Isn't that a heads up that these type of places are dangerous?

The answer to caring for people with disabilities can be found by studying Disability History.

I invite everybody listening right now to my Disability History presentation on October 21st at 6:30 in Norfolk at Hope House hosted by The Arc of South Hampton Roads. If you study Disability History you will see segregation leads to abuse. Stop profiteering from caring of people with disabilities. There are current practices being used now to care for people with disabilities in their homes. It cost less to serve an individual in their home. Viruses such as COVID-19 kills at an increased rate in segregated settings such as Vanguard Landing.

I believe in small group homes sprinkled throughout our community.

I believe in strengthening home care support so anybody with a disability can live at home.

I believe everybody should live in their community, near or with their loved ones.

Segregation is not the answer. It never was and never will be.

 

Segregation is not the answer. It never was and never will be. Do not fund Vanguard Landing.

Please look at the Facebook page that I and another advocate made:
https://www.facebook.com/advocatesagainstvanguard


A conversation on my Facebook

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Released March 9, 2014
New York Times Documentary: The Men of Atalissa

Produced by Kassie Bracken, John Woo and Dan Barry, "The Men of Atalissa" is the evocative, haunting story of a few dozen men with intellectual disability who lived in an old schoolhouse on top of a hill. For more than three decades, they were an integral part of an Iowa farming community, worshipping at the local churches, dancing at the local bars, working at a nearby turkey-processing plant; they were affectionately known as "the boys." But none of their neighbors knew of the day-to-day abuse the men endured in that schoolhouse on the hill.

The Iowa community had no idea of the abuse going on inside the bunkhouse.
“I’ve been in the building back when it was nice.”
“Never heard them complain.”

Video  |   Article   |    A conversation on my Facebook

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To explain or not to explain: That is the question

When talking to the public don't explain your disability at great length and then turn around and ask them to treat you like everybody else.
It's a very contradicting message and I would love to see people with disabilities (and parents) stop using this way of introducing themselves.

Your disability is a part of you, but it does not define you. It's not the most important thing about you.

If you start a conversation off with your medical diagnosis and rattle off how or why a disability effects you, I feel strangers will just compile the information into a large pile of CAN'T. You are building your own mountain that you will have to scale. People with disabilities have enough barriers, why create them with words?

A person is much more than their disability. Choosing how you communicate with the public that will convey that. Stop explaining yourself away. Stop self-identifying as a label. 

When meeting a person for the first time, find common ground with them. Friends heighten quality of life. Friendship can form under any shared interest. If the first thing out of your mouth is 'disability', however honest and clear you describe it it will create divide between you and the potential new friend.

Do you hear people say, "Hello. My name is Bob. I have high blood pressure."? No, you don't. Leave the medical labels in the doctors office. Even then doctors can be wrong, or medical diagnoses are always changing, or medical discoveries are made, so why bother trying to stuff yourself into a pre-labeled box?

I used to tell anybody and everybody about disability, in hopes of if people understood then then they would accept. Explaining yourself into oblivion does no good. It takes and leaves you with nothing. It dehumanizes you. There is a time and place to explain your disability.

I do believe in teaching awareness in a careful all encompassing way. 
This disability month, that disability month…. It's starting to really get on my nerves. How much awareness does a person need to be beat over the head with? I'm sure by now, the bombardment of awareness has turned into a dull mind-numbing roar that the public has tuned out. 
Instead of a particular disability awareness plug/PSA, advocate how people with disabilities should be treated. BUT then when doing that, you'll see the disabled community run into this paradox:

"Just like you." 
OR 
"Different. It's ok to be different." 
If it's confusing to me, our children must be baffled!

I'm sure we all want to be accepted. We want a space at the family table, so to speak. In that aspect everybody on earth is the same. The truth is we  each have our differences and as humans we are intelligent enough to include everybody.

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"As we think so shall we speak, as we speak, so shall it be.”

People First Language is a way of speaking about people with disabilities in a positive manor that does not put disability in the spotlight. Too often the disability takes over conversations when the true focus should be on the person's likes, needs, wants and life goals. The way we choose to speak is so important, because it forms the world around us.
People First Language also changes how we describe assistive devices.
For example: She's in a wheelchair Changes to: She uses a wheelchair.
People First Language may seem like a small thing, but if more people used it attitudes towards disabilities will change for the better. So be sure to try and use it and maybe just by listening, somebody near you will start using it too.

Here's a fabulous webpage that gives more detail about People First Language:
http://www.gcdd.org/news-a-media/people-first-language.html


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When reaching out for support or advocating for your child, at what point can it be damaging to social perception of disability?

A Facebook chat about two articles:
Paying For My Special-Needs Child
&
Why We Published A Photo Of A 16-Year-Old In A Diaper

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“I stopped explaining myself when I realized people only understand from their level of perception.” 

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Stop blaming the disability. Take it off your list as the #1 go to reason when there is a problem.
Facebook chat
 


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Coalition Rally and Advocacy Day in Richmond - 1.21.13

Coalition Rally and Advocacy Day

at the

Bell Tower on Capitol Square in Richmond

I have known about the Coalition Rally and Advocacy Day for many years now, but this was the first time I was able to attend thanks to The Arc of South Hampton Roads. I was so excited to be there amongst my peers in the disabled community!

It was beautiful weather, which is rare for Richmond in January. The sunlight lifted up our spirits even further. Luckily there wasn't a harsh wind either. We were blessed to have such a fine day, because the next day the temperature dropped.

I arrived on a tour sized bus along with my fellow local advocates, as we were pulling up the bell on the Bell Tower was already ringing. For some reason that gave me a joyful feeling for the day ahead.

A small band was playing happy rallying tunes to further pump the spirits of the crowd up. I couldn't wipe the smile off my face when watching all different types of people with disabilities dancing and laughing to the music.

It was exhilarating to see so many long time friends gathered in one place. It was also a wonderful opportunity to make some new friends too! I'm a big believer in, “It's not what you know, it's who you know.” So hopefully my Social Network grew a little bit larger because of the rally yesterday.

There were so many fabulous speakers. Some delegates, people representing mental health services, advocacy organizations and self-advocates were there. I was honored to speak on behalf of VAULT. I'm a board member of the first cross-disability advocacy group in the state, Virginia Advocates United Leading Together. There were so many voices that wanted to speak but there was not enough time. I'm so glad that so many people wanted to speak out. So many strong self-advocates is a sign of a bright future for all.

After the rally, the energetic crowd headed up the hill to do what they traveled all that way for; to advocate for themselves and loved ones, so the delegates knew for sure to listen to our voice!

Highlights of the day:

Telling a legislator about a fact he did not know:

People on medicaid can't get married.

The look on his face was interesting. I knew my point dug in deep.
(I mean they can, but they'll loose Medicaid)

Embarrassed by tracking mud into the Senators and delegate's offices. Doing my spiel and when apologizing for the mud and hearing all sweet like in a southern accent, "It's alright, Don't you worry about it." I mean they have maids at night, right? lol!

Being at the General Assembly for an outside rally that is mainly about mental health services THEN discovering gun rights advocates are there too, in the building. I doubt the two groups co-mingled. Sad. Missed opportunity.
…Maybe?

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State Budget Hearing - 1.4.13 - Medicaid Waiver

Here's the speech I gave:

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. I make a positive difference in my community thanks to my PCA.

For a true blue inclusive community, to see people with disabilities living independently and to see more of those individuals in the workplace, personal care assistants need to be paid more and given quality health 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 many others.

Please add 7,500 Waivers slots to help the those on the wait list. People with disabilities should not have to wait to have a Personal Care Assistant. PCAs are essential to countless people with disabilities living in the community. Families that want their loved ones at home, they need support in the way of 400 ID Waivers and 200 DD Waivers. By supporting this, you will be enabling Virginia to complying with the Olmstead Decision of 1999, which states people with disabilities have the right to live in their community.

With the state wide closure of institutions you must require budget transparency and use the money saved by the closings to help families on the Waiver waiting list. Restructure the Waiver to promote smaller group homes which would allow for inclusive communities. Smaller group homes would be also safer for people with disabilities, because a smaller operation would squeeze out corruption, abuse and murder.

This state is currently ranked 45th in the country for its community-based residential services for people with disabilities. I hope you act now to make Virginia a state we all can be proud of. I urge you, Virginia policy creators, to take this historic opportunity to reform community-based services for people with disabilities! 

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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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