US Department of Justice Left Their Job Unfinished in Virginia

COVID19 has exacerbated systems that were already broken. In my example, my Medicaid Consumer Directed services that pays my Personal Care Attendants have never been paid close to a living wage, health benefits, etc. What that translated to during COVID19 is I could not find any attendants to assist me in my home. I have gone for 5 months without an attendant. When I sign up with agency services, attendants have an extremely high turn over rate.

I also work from home, so if i don't have an attendant to get me out of bed, I also can not clock in for work.

In Virginia, attendants in group homes are paid more than attendants assisting individuals in their own homes. On January 26, 2012, a Settlement Agreement was reached to address the US Department of Justice findings that the Commonwealth of Virginia failed to provide services to individuals with disabilities in the most integrated setting appropriate to their needs as required by the Americans Disabilities Act and US Supreme Court’s Olmsted Decision. This resulted in closings of institutions, but then group homes were built that were smaller versions of the institutions that the US Department of Justice said the state had to close.

If the US Department of Justice requires Virginia to honor the US Supreme Court’s Olmstead Decision that states Virginia must provide community-based services, why are group home attendants paid more than attendants who assist individuals in their community (at home)?

Stop incentivizing (paying more) for serving people with disabilities in institutional type settings, such as group homes. The setting of where an individual receives attendant services should NOT dictate pay rates. 

End institutional bias by paying in home attendants a living wage. Support policy that shows equity in access to Home and Community Based Services (HCBS).

My video I use to advocate:
https://youtu.be/r5FTCZIe9bA

Report: Rethinking Direct Care Job Quality:
https://phinational.org/resource/would-you-stay-rethinking-direct-care-job-quality/

Create a bill that ensures Personal Care Attendants earn a living wage #EndSubminimumWage

Create a bill that ensures Personal Care Attendants earn a living wage #EndSubminimumWage

 

Are you going to create a bill that ensures Personal Care Attendants earn a living wage?

Did you know Attendants are paid less than a fast food employee?

I can not find an attendant and without one I can not get out of bed or clock in for work at home.

Paying subminimum wage must end now. My care and contribution to society is worth paying an attendant a living wage.

Watch my #WhatWeNeed video:
https://youtu.be/Scd8PQjqe6k

Email me to join the movement to end subminimum wage. View email address HERE

#VirginiaCARESforDD
#WeAreEssential
#WhatWeNeed
#DoYourJob
#GetBackToWork

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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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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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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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.

_________________

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."

_____________________

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."

______________________

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?!

________________

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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A few of my favorite parts of Kathie Snow's book Disability is Natural

I met Kathie Snow at my last Partners in Policymaking class.
When I asked her to sign my copy of her book this is what I said to her:

"Your book was validating and infuriating at the same time."
She knew exactly what I meant.
"You had to live through that didn't you?"
"Yes, and I like to read books to escape what you wrote about, not the opposite!"
We both smiled.

Her book is basically what (by my mid 20's) I got tired of trying to tell/show/prove to people.
It's not me, it's you with the problem!
you=society
I'd recommend this book to anybody. I mean everybody. I also suggest you ask your public library to order a copy, so even more people can read it.
I'd like to share a few of my favorite passages. Actually there's many parts I love, but i'll just share a some.

Snow, Kathie. Disability Is Natural: Revolutionary Common Sense for Raising Successful Children With Disabilities. Woodland Park, CO:BraveHeart Press, 2005

http://www.amazon.com/Disability-Natural-Revolutionary-Successful-Disabilities/dp/0970763662

http://www.disabilityisnatural.com/



“There have always been people with disabilities in the world and there will always be. One of every five Americans is a person with a disability. People with disabilities make up the largest minority group in the United States, and it’s the only group that anyone can join at anytime—like in the split of the second of birth, in an accident or through an illness. It’s the most inclusive minority group; disability does not discriminate! People of both genders, and from any age group, ethnic background, socioeconomic level, religious faith, and sexual orientation may experience disability. And the incidence of disability is on the increase, because of advances of medical technology. Not too many years ago, premature babies often died shortly after birth. Today, they survive, but may have disabilities. Once upon a time, many children and adults died from accidental injuries or serious illness; today they live, but with a disability. And many of us will live to a ripe old age but with some type of disability. Contrary to Conventional Wisdom, it’s as natural or normal to have a disability as it is to not have one.”


“I found that there were only two categories of people that no one was willing to trade places with for a day: inmates and people with disabilities.

A brief discussion with participants reveals why they feel this way: it's not know you've committed a crime or the presence of a disability (having to use a wheelchair, for example) that makes people reluctant to trade places with those two groups of people. The overriding factor is the environment. Where and how these groups of people spend their time! So I wrap up that part of my presentation by asking conference participants to do whatever it takes – to create change – so they would be willing to trade places with an adult or a child with a disability for one day.”


“More progress has been made in disability issues in the Untied States in the last fifty years than in hundreds of previous years. We have more laws, programs, entitlements, and services than ever before. Yet individuals with disabilities are still excluded, segregated, marginalized, and devalued. How can this be? Because we can't legislate attitudes or ethical behavior.

There is no doubt that – as Ed Roberts believed – old attitudes and paternalistic authority constitute the greatest barriers facing people with disabilities, including your child and mine. Until attitudes and perceptions change, little progress will be made toward the inclusion of people with disabilities in all areas of society.”


Kathie Snow quotes Joyce Rebeta-Burditt:
“Do you know what it's like to feel wrong 24-hours a day? Do you know what it's like to be disapproved of, not only for what you do and say and think, but for who you are?


I'll paraphrase the rest:
Get your child the Assistive Technology he or she needs now.
If you think your child practices enough with a walker one day they'll walk, you're wrong. If they are struggling YOU need to get over it. Your kid needs a power chair.
If you child can't talk getting a communication device will not prolong them from talking. Every human being needs to communicate.
While i understand why parents hope for a healthy baby, the way it's expressed could be sending the wrong message from the start without even realizing it. "Oh, I just want my baby to be healthy!" Of course you do, but will you love your baby any less if it has a disability? (I hope the answer is No) I'm sure I was considered a sick baby, but I turned out wonderfully. Didn't I?
The chapter on education is my favorite in the book! To sum it up, if the disability employment rate hasn't improved after all these years then the way we are educating children with disabilities is wrong. Inclusion in schools, leads to inclusion throughout life!

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Employment and Disability

I feel a little silly writing about this subject. A line I heard at my few job interviews, applies to this. ‘I have little to no experience.’ I have no degree. I’ve only had a short internship which was many moons ago, yet I’m writing this blog.

There’re many factors that contribute to the continually low disability employment rate. I will list a few of them. This is my opinion. I may be wrong, I may be right. That’s what a blog is, an opinion.


Lack of access to higher education for people with disabilities

Some people with disabilities may need an aide to write etc for them in class. When I was in K-12 the public school system provided an aide. When I graduated, I had to find my own aides while programs like the VR Pas and the CD Pas paid them via the state. Hiring and keeping an aide even for home care is difficult. I can’t imagine managing an aide for college.
Click Here to read my experiences with personal aides.

Sure, you can earn degrees online. But if I were an employer I wouldn’t want to hire a person coming off as a recluse that has had no interaction with people and no set schedules.
Vocational schools for people with disabilities should offer degrees.
I went to one of these schools that provided me housing and personal care but all I earned for my drafting class was a certificate. This was a state run facility, so that somewhat explains it.
How about offering to the students that can and do want to go to college, work out a tuition program? Students can be housed there and receive the care they need, plus earn a college degree by either hiring accredited teachers onsite, or providing transportation to a nearby college. Vocational schools for people with disabilities may be already doing this I’m not sure.


Acceptance in the workplace

I’m going to make a bold assumption here: Most people are uncomfortable around people with disabilities. It’s one thing to have access to the outside world via the ADA, it’s a completely different thing to be chosen to come into a company to get a job done.

The invisible barriers of awkwardness towards people with disabilities need to come down. Now there’s an interview policy that prevents an interviewer to ask about a disability. Questions can only be asked that verify if the job can be executed in relation to a persons disability. You cannot ask questions about the disability outside of the needs of the job. While I understand that focuses the attention on the job itself and off the disability, I can’t help but wonder if that’s not enough to relieve the awkward feeling.

DRS (Dept of Rehabilitative Services) was in charge of my time in the vocational school and finding me job interviews. They also helped me find funding for Assistive Technology to use on computers. They did a great job until it was time to help find me a job. A few things stand out to me as I look back on it.
It was silly to be promoting somebody without a degree. They saw how smart I was, why not help me go to college to get that degree? When I say help, I mean point me in the right direction of other resources that can help. I don’t mean I expected them to do it for me.
I feel DRS wasted a lot of time job-hunting on my behalf. It was clear employers were less than thrilled when they heard about me. That being said, I think a large division of DRS should focus on Disability Awareness Training for businesses. DRS could come up with a workshop that alleviates the awkwardness the abled-bodied community has towards the disabled community. Knowledge is the antidote to fear of the unknown. I also believe Disabled History and Rights should be taught in schools so future generations can be more open-minded about hiring people with disabilities.


Getting the job done

I feel I’m the same as everybody else and should be given a fair chance. At the same time, I also know I am different. I may do things different than others, and I may take more time than others.
So is it really fair for employers to bend their expectations for me? No. Time is money, money is time.
But if I can do the job on time, then what is the fuss?
I believe employers have a hard time seeing pass people with disabilities transportation schedule, modified workplace, attendants, etc to gauge how well the job will get done. I don’t blame them, it’s a huge leap of faith on their part.
Businesses and for the most part people like their routine. Any change or disruption causes anxiety. Some people with disabilities need modified workplaces, modified work schedules, etc. At worse, some employers must feel hiring a person with a disability detrimental to the health of their company. A glitch in a well oiled machine.
Flexibility goes a long way with hiring people with disabilities. Often I would guess, these so-called glitches would work themselves out in a short period of time. Still the fear of the unknown is there for the employer on the interview.


Actively finding work for people with disabilities

Certainty everybody with a disability can contribute. But why are the Disabled Community continually held to the same standards as the abled-bodied population, when they’re different? Can an employee with a disability accomplish the same job as an abled-bodied employee? The answer is yes at times, but other times it’s no. So why can’t jobs be created for only people with disabilities? I suppose that is very similar to Affirmative Action, which has its good points and bad.

Why can’t the government take a more active role in the high disability unemployment rate? There’re people with disabilities that are using the government’s money to survive who would rather be working. So I would think the government would want to step in more forcibly to save money and see that businesses hire people with disabilities. Wouldn’t tax payers pay less if more people with disabilities worked?

Some hear that and think ‘oh no, a government takeover!’ I do agree the government is overwhelmed as it is and doesn’t need more burdens. I also believe, the high disability unemployment rate is very similar to the 60’s when government stepped in to see that African Americans were ingratiated into public schools. Do you still see the military escorting African American kids to school? No. Very quickly the public schools in the south caught on and obeyed the law.


I don’t like to end my blog like that, because I know some people will see the word ‘government’ and freak out.
The disability employment rate has never risen...as far as I know...so I ask people what ideas do they have?


Click Here to read more of my views on this topic. I've also posted useful employment links there.

Other factors that contribute to the disability unemployment rate are explored in a report by the UCP: The State of Disability in America (pg.36) HERE