If I were in your shoes...

I had a team meeting today to prepare for Youth Leadership Forum.
My supervisor was talking to me and my coworker about what we would
tell the YLF delegates (rising Juniors and Seniors in high school as well as post- graduates) what
we wished we had known at their age. Tonight, I can think of a few things, and I know I'll build on that list as time moves on.

List

1. Your support circle is literally what can drag you out of bed
each morning and keep you going through the night.
Hold the people you love close to you.You don't know how long
you will have them for.

2. Some fights, you might just have to decide to back away from
until another day. Don't let that get in the way of feeling proud of
who you have become.

3. Independence is possible. Don't let anyone tell you it's not.


4.  Modifications may be necessary, and that's alright.

5. Don't brush your abilities or your disabilities under the rug.

6. You learn as you go. Mistakes teach you more than your successes sometimes.

lifelong learning

One of my favorite parts about the job
I am at now is that I am learning something new
from somebody every single day.
I have the privilege of getting to work
with amazing individuals on a daily basis.
These individuals are some of the most driven
and caring people I have ever met, and they also
happen to be parents of children who have developmental
disabilities or adults (self advocates) who have developmental disabilties.
I have the chance to work with each group of parents and self advocates for
8 months, facilitate them in learning advocacy skills,  and watch them become better
advocates as they learn about the disability system.
(http://www.vaboard.org/policymaking.htm).
Each of the Partners in Partners in Policymaking works on a final project
from November until May.
Many of these projects involve time, scribes, phone calls, e mails, letters, and A LOT of patience.
The main requirement for the project is that it benefits the community in some way.
Tonight, I promised one of the Self Advocates that I would post his website,
 http://moreservicesinthecommunity.com/#

which also contains a link to his petition.
The petition focuses on having services (such as speech therapy, occupational therapy, and physical therapy) in the community for adults instead of in the therapy gym.
He hopes to send the petition to DMAS, and he has already made other strides to get involved
in his community.

This is just one of the many projects that our Partners have focused on during Partners in Policymaking, and this Self Advocate is just one of the 50 I have had the honor of working with
over the past 2 years.
A lot of individuals who have gone through the program state that it changed their life.
The truth is, they have changed mine.

Fast Paced Much?

Things have been moving so fast right now that it seems unreal
that I'm still in the same place.
This weekend, though I was busy,
I realized how much I need to SLOW DOWN and appreciate the simple things.
While working and trying to take care of things,
I realize it's the time with my friends that takes the toll.
I know most people don't see this blog,
but it's the people in my life that count,
and I want to take the chance to
spread the love to the people who make my life wonderful.

Miss Independent?

They don't get it.
I have these conversations with my parents about
independence all the time.
The ideal for me at this point would be to move
in with two other friends who both have disabilities.
We'd be a different kind of family, but we're a family nonetheless.
People are this stage now where they know I want independence.
Yet, they keep telling me how much "physical support"I am going to need,
and how my friends can't do that.
I keep telling them I'll make it work.
I'm tired of the fight.
I want independence, but I'm at the point
where I am just giving up on it.
This topic is so close to me...so much what I want, and yet,
I'm willing to just give up the fight right now.

I'm sorry this blog has gotten to be so depressing...
thinking of discontinuing it.

Confirmation

So, I've been hearing for so long that I can't be a self advocate and a professional.
I never know what to say to that...

Then, today, I confirmed that I'll be on a committee of self advocates for Partnership for People with Disabilities.

It makes me really nervous to put myself out there,
but as someone told me this afternoon,
it might just be the universe telling me that
something else is possible.

Off to bed, or at least to lay there (nocturnal as I am)


<3

Dear Insurance Company:

Dear Insurance Company:

If you keep denying my medication and refuse to let the pharmacy
refill it, I guarantee you a hospital stay is going to be more expensive.
I don't pay out of pocket EVERY month in order for you to deny necessary medicine.

Public Comment regarding DOJ agreement

This was the public comment given two weeks ago regarding the Department of Justice Agreement to close 4 of 5 institutions in Virginia. There were two DOJ representatives there, and I was shocked that one of them recognized me from a previous conference in August.

Good Evening,

My name is Rachel Loria.

I am from the City of Richmond.                      

My Delegate is Jennifer McClellan, and my Senator is Donald McEachin.

I come to you tonight as a Self Advocate.

While it seems relatively easy to say most days, I guarantee you the journey has been far from easy.

My parents fought for 10 years to try to get an appropriate diagnosis… a correct diagnosis. After 10 years, Doctors continued stating characteristics that I portrayed that reminded them of traits associated with multiple different disabilities.  With no diagnosis in sight, my parents and therapists taught me to compensate for the weaknesses I have and to work to overcome them.  I still work on this every day.

Each milestone that professionals questioned if I would make, I did.

In high school, I was rejected from one private school due to disability and graduated from a different one with honors. While several teachers told me to go to a community college because they thought a four year degree would be too difficult, I graduated in four years  while working and continued towards my Masters in Education (also while working), which I walked with last May. I was told to go to DARS because I would only find supported employment. Today, I am working part time and doing a job I love.

I’m not here tonight to tell you what I have accomplished.

I’m here tonight to say that if I hadn’t been given the chances that people gave me,  I would not have gotten here. This is more a testament to them than to myself.

With that said, people who have disabilities need to be given equal chances towards all of their goals, specifically tonight, independent living.

I say equal chances because if you ask an individual who does not have a disability if they want to live as independently as possible or in an institution, they will, more chances than not, choose independent living.

Independent living is something I am still working towards, and I know I will need support.  

I am not just here for myself tonight though. I work with self advocates and parents on a daily basis, and I am fighting for others who also want to live independently and may or may not need support.                     I come to you tonight to encourage you to follow through with the DOJ agreement and give individuals with disabilities a chance to live as independently as possible. DO NOT let their diagnosis or labels or traits define their futures.

I thank you for your time and for giving me the opportunity to speak with you tonight.