ECNV Newsletter: February
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In this edition, ECNV staff and consumers go to Richmond for IL Day. NCIL along with ECNV will host a workshop on youth advocacy in March! Judith Heumann book signing, The Heumann Perspective, March 3rd. Mark your calendar for an upcoming workshop by dLSV. How to protect your heart. Rare disease Day: A Closer Look at Living with Trigeminal Neuralgia. ECNV is looking for travel training interns!
Are you traveling to the DC Metro area and need a personal assistant or would like to apply to be a PA? Please see details below.
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Presented by :
The disAbility Law Center of Virginia
When:
February 19, 2020
Where:
ECNV from 11:00 - 2 :00 pm
Description:
11-12
dLCV will be educating advocates, individuals with disabilities, and service providers about identifying and addressing issues related to service and/or companion animals.
1-2pm
After the presentation there will be 15 minute one-on-one “meet and greet” appointments with individuals who feel they may need information about their legal rights about disability related issues.
RSVP:
Email: elizabethk@ecnv.org
Phone: 7035253268
Please email Elizabeth with any accommodation requests.
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When: March 3, 2020 7-8pm
Where: Politics and Prose Bookstore 5015 Connecticut Ave
NW Washington DC 20008
Description:
An internationally recognized leader in the Disability Rights Independent Living Movement, Heumann has advocated for disability rights since the 1970s, working with many NGOs and serving as the World Bank’s first adviser on disability and development. As she recounts in this powerful memoir, her fight for equal rights began early: she was paralyzed from polio at 18 months, then nearly barred from her second grade classroom on the grounds of being a “fire hazard.” Later she filed a successful suit against the New York City School system for denying her a teacher’s license, led the Section 504-Sit-In at the San Francisco HEW—the longest takeover of a governmental building in U.S. history—and sparked the movement that led to the creation of the Americans with Disabilities Act.
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Presented by: Sheryl Grossman
When: March 26, 2020
Where: ECNV 2300 Clarendon Blvd 2nd Floor Conference Room
Arlington, VA 22201
Description:
ECNV is proud to announce that Sheryl Grossman,Community Living Advocate,from the National Council on Independent Living will be presenting a youth advocates workshop on March 26th, 2020 from 6:30-8:30 at 2300 Clarendon Blvd. The workshop will include an introduction to the beginnings of the Independent Living movement and activities related to the ADA. Dinner will also be provided free of charge. If you are between the ages of 16 and 26 please contact ..
RSVP:
Email: elizabethk@ecnv.org
Phone: 7035253268 | TTY: (703) 525-355
Please email Elizabeth with any accommodation requests and for additional formats of the flyer if needed.
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When: Sunday February 23, 2020
4:15 Check-in and get your gear
4:30 - 6:30pm Adaptive climbing clinic
Where: SportRock Climbing Center
5308 Eisenhower Ave, Alexandria, VA 22304
Description:
The first visit to one of our adaptive climbs is free! Returning climbers are asked to make a donation (suggested amount, $10) to cover all necessary equipment, climb time, and coaching/instruction. If you are unable to pay that amount please indicate "scholarship" on the registration below. We are 100% reliant on donations to keep the climbing clinics going but please do not let money deter you from participating!
To participate or volunteer please click
here.
Any questions in reference to this chapter should be directed to our Chapter Program Director Judith Erger at judith@gocatalystsports.org
Please note that due to the inherrant risks involved in rock climbing, Catalyst Sports Adaptive Climbing Clinics are not recommended for people with intellectual, sensory, and behavioral issues.
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Social / Support Groups
Young Adult Knights
**NEW
(ages 18-30)
When: February 28th 6-8:30
Where: TBA
Description: Young Adult Knights, for those living in Herndon, Reston, Chantilly, Clifton, Fair Oaks, Centreville, Burke and Fairfax/Springfield!! If you are between the ages of 18-30 and want to make connections and friends in a relaxed fun atmosphere then please join us. We will meet once a month to share a meal and a fun activity. Come with your ideas of what the social group should be called and for fun adventures. Laser tag, movies, dinner at restaurants, bowling, ice skating, have been ideas proposed already and there are endless possibilities!
TGIF Social Group
When: March 6th 5:30pm-7:30pm
Where: Sawatdee Thai Restaurant 2250 Clarendon Blvd, Arlington, VA 22201
Description:The TGIF Group is a chance for local non-disabled and disabled people to relax together after a long week and feel the energy of the disability culture (yes, there IS such a thing!)
Our goal in hosting these get-togethers is to further the mission of ECNV; for individuals with disabilities to improve the quality of their lives, determine their own lifestyles, participate in all aspects of society and secure their human and civil rights.
Sometimes, the greatest barrier is attitude. These get-togethers are an attempt at lowering this barrier by socializing together and creating opportunities to develop friendships in our community that might not otherwise happen!
The ENDependents Social Group
When: February 21st 5:30pm-7:30pm
Where: 2300 Clarendon Blvd Suite 250 Arlington, Virginia 22201
Description: The ENDependents is a monthly social group that meets for pizza at the ECNV office. Everyone is welcome! Join us for food and fun for just $5!
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by: Alexa Mavroidis, Peer Mentor
Every year, ECNV staff and consumers travel to Richmond to meet with legislators in the Virginia General Assembly to inform them about the effects of proposed laws and proposed amendments to the state budget on Virginians with disabilities. This year, we informed them about proposals for CIL funding throughout the state and about proposals to reduce the waitlist for waiver services for people with developmental disabilities, many of whom have waited many years for those services.
We met with legislators (or their aides) who serve the areas where ECNV’s consumers live. We talked to them about our experiences working to support Northern Virginians with all types of disabilities, and staff and consumers alike who have disabilities ourselves spoke of our personal experiences with disability services, with services from CILs that have helped us, with personal care, and with other things that we meant to address.
As often happens, some of the legislators posed for pictures with us, a fun little memento of our time in Richmond and some time to relax. This time, we managed to catch up with Speaker Filler-Corn just as we boarded our bus to leave. We greeted her, shook her hand, and got a few pictures. (But not all of them came out!)
As we have for many years now, we very much enjoyed going to Richmond and advocating for the needs of ECNV consumers and all Virginians with disabilities. IL Day is a wonderful opportunity to talk to the people who set the policy that affect our lives—as well as to catch up with people from other CILs across Virginia. Staff and consumers had a wonderful time!
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by: Selvin Garcia, Director of Travel Training
ECNV is accepting applications for an Intern in the Travel Training Program. Any individual who self-identifies as an individual with any type of disability is eligible to apply. The selected applicant will teach individuals with various types of disabilities how to use public transportation, safely, throughout the Washington DC area. Duties include planning routes via subway, bus or other transportation modes; accompanying trainees on multiple trips until they are able to travel on their own; documenting each training and reporting activities as required; and assisting with marketing the program through connecting with disability organizations, schools and agencies.
The ideal applicant should have experience in providing services to persons with disabilities. We seek a patient, positive professional who can teach this important independent living skill to teens and adults with mental, physical, developmental and intellectual disabilities. Familiarity with the DC Metro area is important as are basic computer skills. This position requires a positive attitude and adaptability in meeting the physical needs of persons with a variety of disabilities.
Scheduling flexibility is required. Generally, Travel Trainers work regular business hours. However, Trainers also work with those who need to practice getting to work or attending other functions.
Communication skills are extremely important as we strive to make and maintain relationships with other like- minded organizations and individuals.
Skills and Educational Requirements:
Graduation from an accredited college or university with a bachelor’s degree in Allied Health Sciences, Special Education, Rehabilitation Counseling, Human Services, Orientation and Mobility, Therapeutic Recreation, or a related field.
Must have the ability to interact and communicate effectively with people who have a wide range of disabilities.
We are located at the Courthouse Metro Station. The salary range for this position depends on your qualifications and experience.
Please submit your resume and a COVER LETTER to : selving@ecnv.org
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Blog Post by: Elizabeth Kumar, Communications Manager
February is American Heart Month. During this month we are reminded of how important it is to keep our hearts as healthy as possible! Even through limitations, there are ways we can protect our heart. According to the Mayo Clinic, getting as active as possible can improve your mood, increase energy, relieve stress and even increase your self esteem.
There are several ways to protect your heart. One is through diet. Depending on your activity level, portion control is a key element in keeping your heart healthy. A diet high in leafy greens, whole grains and fruits are an excellent way to stay healthy. It is important to limit saturated fat and avoid trans fat. Reducing sodium and eating low fat protein sources is also important.
The key to sticking to any diet is planning ahead allowing yourself a treat every now and then. Other than diet, destressing is another say to keep your heart healthy! There are many ways to do this in addition to exercise, many people do things they love such as meditation, getting creative, spending time with loved ones. It is important to set small goals for a greater chance of success when changing your lifestyle and having support can help move you into the right direction when protecting your heart! Before starting a new diet or exercise program please consult your physician.
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Blog Post by: Earnst Ilang-Ilang
This month, a special day occurs at the very end of February – no, I am not talking about the “Leap Year”, but rather: Rare Disease Day. This important day is meant to raise awareness for individuals and patients living with rare diseases, which account for 1 in 20 individuals living on Earth. Working at the ENDependence Center of Northern Virginia, I have been blessed to meet so many people who continue to live their lives regardless of their challenges – it is truly a testament to their character, as well as their courage to see past their circumstances and hope for better days ahead.
Rare Disease Day brings significant importance to my own life, as I live with a condition called Trigeminal Neuralgia – an extremely painful neurological condition that affects the nerve that controls your face: touch, sensation, and pain – all of those attributes are controlled by the Trigeminal Nerve. Trigeminal Neuralgia also has another name: “The Suicide Disease”, due to the fact that it is one of the most painful conditions according to neurologists and pain specialists alike. I still remember the day when it first started…
I recently enlisted in the United States Navy in 2006, graduating from Recruit Training Command and being transferred to Groton, Connecticut for submarine training. I distinctly recall the pain that I felt shortly after moving, the excruciating and stabbing pain on the left side of my face, left me paralyzed and unable to train with my fellow sailors . It was the worst feeling I have ever felt – I couldn’t eat, I couldn’t move a muscle, and it felt as though my life had stopped. After weeks of being reprimanded multiple times by my superiors, they finally sent me to a local neurologist, who immediately diagnosed me with Trigeminal Neuralgia.
It took months of pain management, being loaded with Hydromorphone and Morphine Sulfate every day prior to the diagnosis left me mentally beaten and frustrated to say the least. In fact, none of those medications were effective against my nerve disorder. It was only when my neurologist prescribed me medicine specifically to halt electrical signals involved with my facial, did I feel some form of relief.
My struggle did not end there – unfortunately, while most people talk about the symptoms of their diseases, they rarely talk about the side-effects that occur with the medications prescribed. I felt foggy, unable to speak coherent sentences, and forced to take medication that caused significant weight gain. I was fortunate enough to be qualified for neurosurgery at the University of Pittsburgh, and I will never forget the feeling afterwards, when they told me to stop taking my medication. I was terrified of what the future would hold, as I didn’t want to feel the immense pain come back.
A few days passed, and the pain was nowhere to be found. I read horror stories from previous recipients of Microvascular Decompression – the surgery I had underwent. Many of the individuals stated that they felt pain and the surgery was a failure. I consider myself lucky to be pain free to this day. The left side of my face becomes numb, every other day, but that is much more acceptable than the blinding pain I experienced throughout the years before. It is a reminder of my own fortune, and that I shouldn’t take this life for granted, because one day, the pain may come back. It is a terrifying feeling, to say the least.
Rare Disease Day offers me a vessel to educate others regarding my own struggles, but also to be cognizant of others’ struggles as well. It is extremely vital for us as a community to band together and communicate our needs as individuals with rare diseases. If you are lucky enough not to be afflicted with a rare disease, my wish for you is to continue learning about and being open to other’s who have to live with pain or struggle with an disorder, not only to enrich your own life experiences, but also to recognize the fragility of life, and how important it is to lift each other during times of irreconcilable pain. We can all do better as people, to open our hearts to those who need them the most – and is the reason why we recognize Rare Disease Day in 2020.
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Traveling to the DC Metro Area and need a personal assistant? ECNV maintains a PAS registry which is a list of individuals who are available to provide personal assistance. The registry offers consumers and social workers in different counties a resource for finding providers. Many of them have home health care training and are willing to work at a mutually agreeable rate that can be lower than prevailing rates charged by home care agencies. The registry, which is updated on a regular basis, may be obtained by request from the PAS Coordinator. Assistants listed in the registry have completed an application that provides information about their experience and qualifications including personal references. The applicants are then required to attend a training workshop, orienting them to the philosophy of consumer-directed services before being added to the registry.
If you wish to apply to be a personal assistant please fill out the
application and submit to Ruchika Lalwani. Her information is below.
Please contact Ruchika Lalwani at ruchikal@ecnv.org or (703) 525-3268 for further information about the PAS registry.
ECNV does not conduct background or reference checks but encourages consumers to do so before hiring a provider. ECNV does not offer personal assistant management training to consumers.
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Click here for more information about our program, how to donate and to view many of the equipment we have in our inventory.
For more information please contact selving@ecnv.org.
HOSPITAL BEDS AVAILABLE** Pediatric Nasal Cannula 6 ***
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If you have received any services from the ENDependence Center of Northern Virginia (ECNV) or LEND, we’d like your feedback. Your input helps improve the quality of our services and ensures we are meeting your needs.
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