Self-Direction - 5 Ways The World of Disabilities is Changing

Today in the Democrat and Chronicle (A USA Today affiliate) was an intriguing article about Self-Direction and the overall direction that states are moving to provide services.  

Read The Article Here!

Our own country's history is one of tiny steps in the form of civil rights, acceptance and self-determination.  We've seen this progression on race, we've seen it for gender, we're watching it on sexual orientation and we're on the brink for individuals with developmental and intellectual disabilities (I/DD).

1. SELF-DIRECTION - Allowing individuals to drive the decisions for their care and their lives.  Imagine not having any say in where you live, how you spend your day?  Many with I/DD live that life every day, I've seen it personally with my sister.  But more and more opportunities to drive the direction of their everyday lives are springing up.

2. QUALITY OF CARE - The echo of institutions still ring throughout the country but more states have completely closed their institutions for I/DD and the environment for I/DD has improved dramatically over the last few years as more resources and understanding are put toward those programs that provide care.  

3.  OPPORTUNITIES - Because there's a greater understanding of I/DD, and less people are untouched by I/DD, opportunity continues to grow.  Whether it's employment opportunities, residential opportunities, or life opportunities, there are more programs than ever that help people with I/DD to work, live and even go on vacations!

4. COMPETITION - Services for I/DD have become so important that states are actually competing over who has the best system, the best care, who's improving.  They understand that families caring for someone with I/DD will up and move to a new place that provides better services for their family and they are responding.  Here are the 10 Best States for People With Disabilities

5. LIFE EXPECTANCY - The life expectancy has grown greatly because of the increase in quality of care, the opportunities and the resources that are designated for people with I/DD.  Learn more here!

WaiverMarket is addressing all of these.  We are designed for self-direction, just log-on and search for the service you're looking for.  We vet all of our providers to ensure that only legally licensed and approved service providers have profiles.  We encourage all service providers to have at least a free profile if not a premium profile because choice is important to us.  This increased self-determination increases competition which increases the quality of service and encourages new service providers to pop up every week!  All of this will not only improve life-expectancy based on the report referenced, but will continue to improve the quality of life for those individuals living with I/DD.

That's our goal, and it's personal for us.  We'd love for you to join us, share our blog and sign-up for our newsletter.  We will continue to post news and opinions on disability issues and keep you informed of what's going on across the country.  

It’s just not fair, right?

As Waivermarket.com pursues more choice and transparency in the way services are allocated we always want to bring you our opinions about the state of the disability service industry.

Bloomberg published an interesting article recently that I thought warranted a closer look.    

Should individuals with disabilities be paid less than minimum wage?  As we look at this question, a couple of things should immediately enter your mind. 

Not to pull on your heart strings but this is just cut and dry, blatant discrimination.  It is unfair for someone to get paid less for the same work.  This article does not consider several other issues that make this a hard case to make. 

1.       Work, what constitutes work?  For years sheltered workshops have been slowly dismantled in favor of more home and community based services.  The idea of a workshop is more about getting people to be doing something, anything for a period of time.  These tasks may include shredding paper, stapling, filing, or other menial tasks.  In the past, agencies had individuals actually do a wide variety of tasks that were not jobs at all, just tasks to keep people busy.  In this article, one woman explains that taking this service form her daughter would leave her with nothing to do.  I believe we need these activities to keep people engaged, social and overall happy but we need to separate what we consider work from other activities.  When you combine these definitions (work and activities) you create a platform where it makes sense to compensate someone pennies on the dollar.  It also dismisses the people who have overcome any barrier between them and meaningful employment. 

In March 2011, a speech by Samuel R. Bagenstos, the Principal Deputy Assistant Attorney General in the Civil Rights Division of the U.S. Department of Justice, cited the NDRN report in explicitly criticizing the entire concept underlying the sheltered workshop.^[5]

“[W]hen individuals with disabilities spend years— indeed, decades—in congregate programs doing so-called jobs like these, yet do not learn any real vocational skills, we should not lightly conclude that it is the disability that is the problem. Rather, the programs’ failure to teach any significant, job-market-relevant skills leaves their clients stuck. As a recent review of the literature concludes, “[t]he ineffectiveness of sheltered workshops for helping individuals progress to competitive employment is well established.”^[5]

2.       Equal Pay for Equal work.  As you read through the article what picture did you see in your mind.  The truth is most of the individuals in supported employment programs have the skills to be employed, they lack the opportunity.  When I had a supported employment program several business owners, that I wanted to partner with, would ask if they could pay less and if they could get tax breaks for hiring people with disabilities.  The issue should be whether or not they can do the work. 

While I know most people have good intentions, it is sad to think that, as an employer, I should be able to pay less to someone with a disability.  You are not doing someone a favor, you are filling in a position.  The fact that you have hired someone who is seen as non-hirable does not give you Karma credit to pay them less. 

3.       Working for a minimum wage or keeping your life saving benefits.    The third issue is even more interesting.  At the supported employment program I ran we hired a great young man to work in several aspects of our office.  This included, filing, cleaning, organizing and some other office type tasks.  We paid him $10 an hour and he quit his job at McDonald’s that paid him less and came to work with us.  He consistently told us how much he appreciated the respect we gave him.  Instead of many people with disabilities working as a group (talked about earlier in reason 1) he was working with and treated as a peer with all the staff. 

He ran into an issue with his benefits, mainly social security.  His funding source was in jeopardy if he made too much money ($10/hour for 15 hours a week does not constitute someone taking advantage of the system). So now people are stuck in a catch 22, receive respect for a job well done but don’t make too much money or you will be penalized in a major way (benefits, socials security, Medicaid, etc.)  Until we allow people to hold onto needed benefits and pursue a quality of life through hard work and independence we will never see a service industry built around a person’s potential.  

Changes to Waivers in Virginia

Virginia will be completely overhauling their Medicaid Waiver system over the next few months to address a lack of services and 2 extensive waiting lists for services.

See the NBC12 Story Here.

WaiverMarket.com is very encouraged by this move.  Over the last year or so as we developed WaiverMarket.com we've noticed 3 types of state programs.

1. They know exactly where the flaws are and are actively looking to address those flaws and make the system more effective.

2.  They don't know where the flaws are but understand that they can do better.

3.  They think they have no flaws and have the attitude of "We've always done it this way".

Individuals with Intellectual/Developmental Disabilities (I/DD) are first and foremost individuals and they are the most vulnerable in our society.  With that in mind, WaiverMarket.com has a working philosophy that we can always do better, we're hoping these States begin to adopt that philosophy and are encouraged that Virginia has done so.

Welcome To WaiverMarket on the Wire

My sister is developmentally disabled. 

I have to remind myself of that sometimes just to keep me grounded.

I get upset sometimes with my neighbors when they play the music too loud.  Or when I have to drive around town because a store doesn’t have my beverage.  Or I get frustrated when I don’t know what to do on a Friday night.  Or how I hate my job.

All things that my sister would probably give just about anything to do.  I don’t like my neighbors, I can easily find a new place to live and just move.  My car and my license allow me to remove myself from almost any situation at any moment, whether I’m thirst or not, on a Friday night or not, and my job pays me extremely well so I can do all those things.

My sister is just trying to live her life and experience as much of it as possible. 

Her situation is not her fault.  There’s an argument to be made it’s her parents fault (she’s adopted) but even then, there are millions of individuals out there with setbacks that just want to be able to be a part of the world. 

They want a say on what town they live and what type of people they live with.  They understand and accept that many of them won’t be able to live truly on their own, but that doesn’t mean they give up getting as close as they can.

My sister wants to be respected.  She wants to be heard.  She’s not a child, she knows that, we know that, but sometimes we forget, or we don’t listen or we’re just bad brothers. 

She wants to be able to see what’s out there that she can be a part of, whether it’s a new home, learn a new skill like cooking or a foreign language, or be a part of a program during the day so she’s around like minded people.  It really isn’t that much to ask.

So how do we create that environment?

We started with WaiverMarket.com, an online platform for individuals with disabilities, for my sister really.  The idea is that if we can get service providers to be listed, individuals with disabilities will be able to search them out based on need and not some alphabetical listing or pay to play scheme.  

Everyone will be listed.

Now we do have premium accounts which allow service providers to highlight more of their services, add more pictures, and make their profile more attractive, but the sit doesn’t sift through and block those who have a free profile, because my sister deserves more than that.

If my sister wants to find a new place to live, she should have a place that she can look up places that have available rooms. 

But WaiverMarket.com hasn’t eliminated the Case Manager, we’ve only enhanced what they’re able to provide.  They don’t have to set up appointments, call around to vacancies and spend most of their time doing the research, my sister can do her research, we can help her.  This frees up the case manager to ensure that they fully understand not only my sister’s needs, but the needs of everyone else in their case load.  They will have less work because my sister is driving her care.

We created WaiverMarket.com because sometimes we need to be reminded that my sister deserves more.