Archive for August, 2011

Social Events at ECNV

It seems to me that a lot of the information about the ECNV Social Events that occur regularly each month has gotten slightly muddled in the last few years and I want to clear things up. 

ECNV hosts two events each month: TGIF and the ENDependents.  Usually, TGIF is on the first Friday of the month and the ENDependents is on the third Friday.  Sometimes the events are moved to the second and fourth Fridays because of a holiday.   For instance, in September the first Friday is the Friday of Labor Day weekend, so we changed the events to the second and fourth Fridays. 

Basically here’s how the events work: 

TGIF 

Usually meets on the first Friday of the month from 6:00 until 8:00 and usually we meet at a local restaurant for dinner.  Many of the restaurants we go to are local to Arlington and accessible to Metro Stations as some people use the subway to get to the event.  We want to be able to expand our area and widen the choices that we have, but we still need to keep it relatively close to a Metro Station! 

At the restaurant, everybody who attends the event pays for themselves; the restaurants we go to are fairly reasonably priced so dinner, drink, and tip will usually run about $20 or less.  If you have any special dietary needs, it is up to you to make sure that they are met. 

The ENDependents

Usually, this group meets on the third Friday of the month from 5:30 until 7:30 and usually meets and stays at ECNV.  Typically, the group orders pizza and has soda from the grocery store or CVS.  ECNV tries to meet people’s dietary needs; for example, ordering a pizza without tomato sauce for someone who is allergic to tomatoes or getting a gluten-free pizza crust for someone who is allergic to gluten.  Sometimes it is not possible to meet all requirements every time so, so you need to let ECNV know about them beforehand so they can be met. 

At the ENDependents group, usually there is an activity.  It may be watching a movie or listening to music, but the event may also be spent just hanging out, having pizza, and talking.  ECNV tries to provide any accommodation that a person may require to participate in the activity.  Again, sometimes it is not possible to meet all requirements every time so, so you need to let ECNV know about them beforehand so they can be met.  

Depending on how much pizza and soda ECNV needs to buy, attendees will be asked to pay up to $4. 

Both of the Events 

ECNV provides a Personal Assistant at both of the events to help with basic tasks like cutting up food, positioning a straw so a person can drink independently or picking up something that is dropped on the floor. 

ECNV also sends out an email invitation (from www.evite.com) about the event on, usually, the Monday before the event.  The evite gives details about the event and it gives recipients a chance to RSVP so that   ECNV can know how many people to expect.  Using the evite is makes it easy for ECNV to keep track of details and RSVPs, but it is not required that you have an email address to attend either Social Event.  If you prefer to use the phone, you certainly can do that by just calling ECNV.  ECNV does ask that you try to RSVP in some way so that we know how many people to expect. 

When the events were begun a long time ago, the two events were aimed at distinct groups, however now there is no real distinction between the attendees at TGIF and the attendees at the ENDependents.  The main distinction is that TGIF goes out to a restaurant while the ENDependents stay at ECNV regularly.  The groups are both aimed at people with disabilities but that does not mean that only people with disabilities may attend!  Some people bring family members or friends.

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August 24, 2011 at 8:17 pm Leave a comment

In recognition of service dogs

Matt and ClarenI made a really basic mistake the other day with my service dog Claren: I trusted her to do what I wanted.

She didn’t. Even veteran service dogs like Claren sometimes find it hard to know what their human partner wants.

Nothing bad happened. She just wandered into another room instead of the one I was in and did not come when called.

In her defense, she is 9 so she might be a little deaf. Plus, she almost always knows what I am thinking and does the right thing.

The trainers told those of us getting a service dog seven and a half years ago to remember that the dogs aren’t robots and we can’t always trust them to do what we want.

After having Claren with me almost every hour of every day of those seven and a half years, though, it is awful hard not to trust her.

She carries my lunch daily. She picks up what I drop. She makes my wheelchair less intimidating for both me and people who want to talk to me. And she is always there. Not most of the time. Always.

If I fall, before someone can come to help me, she is there. She knows she can’t help, so she just lies down next to me, or if possible, on top of me. And she waits for me.

How can I not trust someone like that?

Guest Blogger Matt Trott

August 16, 2011 at 9:23 pm 2 comments

“My Medicaid Matters” Rally in D.C. on Sept. 21, 2011

ADAPT logoWhy you want to join us in Washington, DC with other disability rights and aging advocates at high noon on Wednesday, September 21st!

We are at a crossroads in Medicaid policy making direction and structural design of the program.

Though we have fought against the Medicaid institutional bias for years and other frustrating aspects of the program, we must admit it has provided a range of acute, rehabilitative, and home and community services that has allowed people to live productive lives in the community.

Medicaid as we know it is under attack.

It is absolutely clear that Medicaid will be one of the entitlements that will be put on the table for draconian cuts and possible block grants or universal caps when the newly appointed Congressional “Super Committee” begin their deliberations. Those deliberations must be completed by Thanksgiving or cuts will occur automatically.

The disability and aging communities must have their voices heard.

Disability, aging and human rights organizations are organizing the “Rally for Real Medicaid Reform” in Washington, DC on Wednesday, September 21st.

This will be an historic event in disability rights and aging history that you will want to be a part of. Critically, you must be there to protect this extraordinarily important program.

If you are not there, you will have no basis to complain in the future.

Join us and make a difference!

August 15, 2011 at 7:41 pm 1 comment

My Cochlear Implant (CI, Part 5) – Replacement

Tony listening to the conversation through his CI

I had an appointment at Johns Hopkins earlier this summer, but things have been so busy I haven’t had a chance to write it up yet.  The Internet here at ECNV is down this morning, so I have some time to put things into writing.

Truly, there is not that much exciting to tell about the appointment.  First of all, traffic was pretty miserable getting from Washington to Baltimore.  The Baltimore-Washington Parkway is a much nicer ride than is Interstate 95, however when you’re sitting in stopped traffic knowing that you’ll be late for an appointment, the trees are less attractive!

Eventually, we got there and got to the Listening Center.  We were about 40 minutes late but my audiologist, thankfully, still was able to see me (I think she worked into her lunch break…what a nice audiologist I have!).

As I said, it was not particularly exciting.  We didn’t really make any significant changes to the processor.  Well, actually, we did make one change that will likely be significant.  As I think I’ve explained in previous posts about my CI, it has three distinct programs which can be set up differently.  We decided to change Program 2 to act as a telecoil (t-coil) which means it will pick up a signal from a loop when there is one.  Before I got the CI, I could really only understand spoken language if there was a loop present.  So it will be interesting to me to see how it works now.

While the t-coil was the only real change we made at the appointment, I did have to make a few changes on my own after that.  When I was attending the National Council on Independent Living Conference about a month later, I was making the rounds on Capital Hill visiting Congressional offices to advocate for disability issues and when I got home that evening, I realized I lost the extra battery I was carrying and the little case that holds it!  I did order replacements, but they’re crazy-expensive and we don‘t know yet if insurance will cover them.

I guess the lesson to be learned here is to be careful with batteries!

By Tony Trott, ECNV Peer Mentor & Editor

August 9, 2011 at 4:09 pm Leave a comment

Picnic Invite to ECNV/SCIN Members

SCI Network and ECNV friends at the PicnicFriends and participants of ECNV are invited to participate in the annual picnic sponsored by the Spinal Cord Injury Network and being held Rocky Run Park in the Courthouse section Arlington on Saturday, August 20, 2011 from 12:00 noon to 3:00pm.  Everyone is welcome to this free cookout of great food and beverages. 

This annual picnic also has a Redskin Season Tickets raffle.  The chances sell for $100 each with a limit of 100 available for purchase.  Along with the Redskin tickets as 1st place prize, there are 9-second place cash prizes of $200.  This allows for one of ten chances of winning, if not the tickets, at least double your money back.  There will also be a number of door prizes. 

Rocky Run Park is located at 1109 N. Barton St. (playgrounds for children) a few blocks away from the new ECNV location at 2300 Clarendon Blvd.  In case of bad weather the picnic will relocate to ECNV. 

Please call ECNV to RSVP, 703-525-3268.

August 9, 2011 at 2:03 pm Leave a comment

Consumer-Directed Services Survey

VACIL Survey: Consumer-Directed Services

Your Ideas Are Needed!

Do you use or provide consumer-directed services? We want to hear from you!

You are invited to join complete a survey about consumer-directed services. The survey will be closed on Friday, August 5.

The Virginia Association of Centers for Independent Living is working on a grant project from the Virginia Board for People with Disabilities. The grant is titled “Improving and Expanding Consumer-Directed Services.” The goal of the grant is to increase the number of professionals who provide consumer-directed support to people with disabilities.

Surveys are being used to gather information from people who use or provide consumer-directed services.

If you are a person who uses consumer-directed services, please complete the survey at https://www.surveymonkey.com/s/CDemployer

If you are a person who provides consumer-directed services, please complete the survey at https://www.surveymonkey.com/s/CDProfessionals

If you are not able to use the above survey links, please cut and paste the link into your browser.

Please share this message with others who use or provide consumer directed services.

Thank you,

Maureen Hollowell
Virginia Association of Centers for Independent Living

August 2, 2011 at 3:15 pm Leave a comment

What’s New at LEND (ECNV Satellite Center)

LEND logoSummer brings heat and activity is heating up in Loudoun. Transportation, Home Healthcare, Youth in Transition, Advocacy and Outreach along with an increasing number of referrals for LEND services keep us busy.

LEND would like to update our Personal Assistance Service (PAS) Registry for Loudoun County residents. If you know of someone looking to be listed in our Registry as a caregiver, please contact Ruchika at 703-525-3268, or the LEND office for an application.

We have been working with local government and nonprofit community partners on surveying the transportation needs of people with disabilities. Thanks to the Loudoun residents who took the time to participate in the survey. If you did not get to complete the survey prior to June 30th, we would still like to hear your transportation concerns.

LEND continues to bring legislators in to our offices to share the Independent Living message. We are working to meet with Loudoun representatives at all levels.

Plans are being finalized to show a series of disability-themed movies throughout Loudoun and partnering with our friends at Loudoun County Public Library System.

LEND has a few of the long-term care printed guides left or you can get the guide on the website at www.ecnv.org, click on LEND Latest News. If you have questions about the guide, please contact Tracee Garner at 571-291-9550 or traceeg@ecnv.org. We hope people will look at this Virginia specific guide and share it with others as a tool for viewing the long term care options with confidence.

LEND has need of a few more Advisory Board members interested in providing input from Loudoun County. Your contributions to the Board can strengthen advocacy and assist in efforts to address the needs of people with disabilities in Loudoun. Please contact LEND’s Director, Bill Ward for more information on joining LEND’s Advisory Board at 571-291-9550 or billw@ecnv.org.

By Tracee Garner, LEND Outreach Coordinator
Article from the ECNV Declaration (Summer 2011 Edition)

August 1, 2011 at 4:28 pm Leave a comment


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