Archive for April, 2012

Whitehouse Monthly Update Call: April 30

Wednesday, April 25, 2012 The Whitehouse with a telephone superimposed

Hello Everyone,

In order to help keep you more informed, we host monthly calls to update you on various disability issues as well as to introduce you to persons who work on disability issues in the Federal government.

This call is open to everyone, and we strongly urge and ask that you distribute this email broadly to your networks and listservs so that everyone has the opportunity to learn this valuable information. I would encourage you to call in about five minutes early due to the large volume of callers.

The conference call information is below.

  • Date of Call: 4/30/2012
  • tart Time: 2:00 p.m. EDT (dial in 5 minutes early)
  • Dial in: (800) 553-5275
  • Code: “Disability Conference Call”

For live captioning, at the start time of the event, please login by clicking on the link below. Please only use this feature if you are deaf or hard of hearing.

This call is off the record and not for press purposes.

If you received this email as a forward but would like to be added to the White House Disability Group email distribution list, please visit our website at and fill out the “contact us” form in the disabilities section, or you can email us at and provide your full name, city, state, and organization.


April 25, 2012 at 3:36 pm Leave a comment

URGENT ALERT for METROACCESS Riders and others who oppose higher fares. Attend the April 26 WMATA Board Meeting and speak out!


Do YOU, or someone you care about, use MetroAccess, which is the regional ADA paratransit service for the Washington Metropolitan Area?

Do YOU think that MetroAccess fares are too high?  Have YOU stopped taking some trips on MetroAccess because the fare costs too much?

Maybe you testified at the public hearings in February and March held by the WMATA Board of Directors and told them that fares are too high.  Maybe you completed a survey or sent written testimony.  If so, THANK YOU!

Since those hearings, the WMATA Board has been considering the WMATA budget proposals for FY 2013 (starting on July 1, 2012) and what, if any, fare increases will be approved for Metro bus, Metro rail and MetroAccess.  Now, they have agreed on a final proposal for fare increases, and they will vote on it at the WMATA Board of Directors meeting THURSDAY, APRIL 26, 2012.

Every indication is that the WMATA Board has decided to keep the current fare structure for MetroAccess with fares based on TWICE the comparable fixed route fare using the fastest trip as calculated by the WMATA trip planner.  Since WMATA plans to increase Metro bus and rail fares, there will be an increase in the actual cost of MetroAccess fares also.  They did decide not to increase the cap on MetroAccess fares, which will remain at $7 rather than increasing to $7.40 per trip.

Nevertheless, the WMATA Board did not consider the urging of the disability community, including their own Accessibility Advisory Committee, to switch to a fare structure that is less complex and easier to understand and use, and to reduce current fares so that people with disabilities and seniors, especially those on fixed incomes, can afford to ride.


The WMATA Board of Directors does not take its final vote on fare increases until its April 26 meeting.  That will be THURSDAY!

This alert is a call to action for MetroAccess patrons and all disability rights advocates.  We need to come out and attend the WMATA Board meeting in large numbers on April 26 and demonstrate by our presence that we want the WMATA Board to decrease rather than increase MetroAccess fares and develop an easier and fairer fare structure.

WE URGE YOU TO ATTEND THE WMATA BOARD MEETING ON APRIL 26.  Come to listen and support the disability community.  Come to testify during public comment.  WE NEED TO DEMONSTRATE HOW IMPORTANT THIS ISSUE IS TO US!

Here are the details:

WHEN:           Thursday morning, April 26, 2012 at 11:00 a.m.
WHERE:        WMATA Headquarters  600 5th St., N.W., Washington, D.C.
Lobby Level
(Judiciary Square or Gallery Place Metro Stations – Red Line)
WHY:             To show our solidarity in urging that WMATA should lower MetroAccess fares and simplify
its fare structure.

If you want to speak in public comment time:  You should arrive early – by 10:00 or 10:30 a.m.  You must sign up to speak at the door.  Each speaker has only 2 minutes and so if you have a lot to say put it in writing.  The speakers list is closed by 11 a.m. when the Board meeting begins.

You don’t have to speak if you don’t want to.  It is important that you are there to show support for those who do speak.  Your presence will speak volumes!

Feel free to share this alert with others and encourage them to attend.


April 23, 2012 at 4:50 pm Leave a comment

Disability and Aging Healthy Lifestyle Fair Friday

Loudoun ENDependence in partnership with the Loudoun County Public Library System announce the 2012 Disability and Aging Healthy Lifestyle Fair Friday, April 13, 2012 at:

Rust Library
380 Old Waterford Road
Leesburg, VA 20175

Over 25 Vendors and Organizations with services and programs specifically for the disabled, aging populations and their families, including:

* Home Modification—Aging in Place & Universal Design
* Home Health Agencies
* Low Vision / Deaf and Hard of Hearing Resources
* Accessible Transit Services
* Inova Hospital Health Screenings on site
* Adaptive-Therapeutic Recreation Specialists
* Freebies and Goodies
* And much, much, more

A workshop will be given by the Department of Rehabilitative Services on Employment Strategies in a Down Economy for the Job Seeker with a Disability @ 3:00 p.m. and just in time to prepare for that summer vacation with the family, a special workshop on domestic and international Accessible Travel Opportunities for Youth with Disabilities and Their Families @ 4:00 p.m. and will include what the ADA says about accessible travel regulations and your rights as a traveler with a disability/family with a special needs child.

This is a FREE Public Event. For more information, email or call Tracee Garner at or 571-291-9550

April 11, 2012 at 1:08 pm Leave a comment

The Pen Is Mightier Than the Sword

Tony TrottThe saying I used for the title of this post may or may not be true depending on your situation; however, it is always true that words can hurt.  Even if theyare not meant to be derogatory, different readers of an article may pick up on something and then the whole article gets thrown out of whack.  When I read an article, no matter what the subject, and I read the words “amongst” or “whilst,” I tend to roll my eyes (aren’t those words just a little too pretentious?).  The phrase, though, that really gets me worked up is “bound to a wheelchair.”

I have used a wheelchair for over a decade to deal with a progressive condition called Friedreich’s Ataxia, and in that time I have not met anyone who was actually physically bound to a wheelchair!  Wheelchairs are very liberating and it does the user a grave injustice to describe him or her as “bound to a wheelchair” or “wheelchair bound.”  I am a “wheelchair user” or a “person who uses a wheelchair;” I am not “wheelchair bound!”

I realize that that phrase was not originally meant to be derogatory, but times (and acceptable phrases) change.  When I read that phrase in an article or column, I try to contact the author right away to explain why not to use that phrase.  In most cases authors/reporters say they see my point and say that they will try to keep that phrase out of future writings.  I also, when I read certain articles that have an opportunity to use that phrase but don’t, write to the author/reporter and thank him or her for not using that phrase and explaining why it was a great choice!

A fellow advocate, John Hudson, was adamant in his opposition to that phrase.  And, truth be told, I never saw him bound to his wheelchair at any of the Georgetown basketball games where we sat in the same section (never saw him bound to his wheelchair at any other time either!).

Below is a great picture that John used “to scold journalists who used the phrase “wheelchair-bound,” suggesting “wheelchair users” and was used in his obituary.

One of my favorite sayings is, “All that is necessary for the triumph of evil is that good men do nothing.”  I’ll stop short of saying that the phrases “wheelchair bound” and “bound to a wheelchair” are evil, but I do feel like “good men” (and women) need to do something!

by Tony Trott  Peer Mentor

April 9, 2012 at 5:53 pm 10 comments

Pooled Special Needs Trusts: Preserving the Assets of People with Special Needs

By Joanne Marcus, MSW, Executive Director, Commonwealth Community Trust

A pooled Special Needs Trust (SNT) is administered by a nonprofit organization that is governed by a volunteer board of directors. Pooled trusts are beneficial when the person with a disability comes into a sum of money and needs assistance managing the funds or when a family member wants to provide financially for their loved one with a disability. The trust also preserves benefits for clients who receive Medicaid and Supplemental Security Income (SSI).

Why establish a pooled SNT?

An SNT allows the grantor, the person setting up the trust, the opportunity to provide funds that will enrich the quality of life of the beneficiary (the person for whose benefit the trust is established) who is living with a disability. The beneficiary may be receiving or may someday need to apply for Medicaid and SSI.  In order to qualify for public means tested benefits, the disabled individual can have no more than $2,000 in cash assets. A monetary gift, settlement or inheritance will likely disqualify the beneficiary from receiving much-needed assistance. Having funds in a pooled SNT will not jeopardize these crucial government benefits.

A trust fund can be used to pay for a variety of expenses including dental care, medical services, wheelchairs, eye glasses, hearing aids, furniture, electronic equipment, clothing, education, recreation and transportation.

Two Types of Trusts

The third-party SNT is funded by a third party, usually a close family member, and can be coordinated with the family’s estate plan. The SNT holds funds that the grantor leaves for the sole benefit of the beneficiary.

The self-funded Pooled Disability Trust (PDT) is funded by the person with a disability, for example, through a personal injury award. This trust is sometimes referred to as a Medicaid payback trust because the trust will have to pay back the state(s) for medical expenses incurred on the beneficiary’s behalf with funds remaining in the trust upon their death. This trust is codified in the Omnibus Reconciliation Act of 1993 (OBRA ’93) at 42 U.S.C. :1396 (d) (4) (c).

Role of the Trustee

The trustee manages and invests the funds for the trust and approves disbursements that are for the sole benefit of the beneficiary. A master trust agreement establishes that the trustee is allowed to administer the pooled trusts under the umbrella of the “master.” Both the self-funded PDT and the third-party special needs master trust agreements are written by estate planning attorneys with expertise in this area of the law and signed by the board of directors.

The beneficiary of the trust is the person for whose benefit the trust was created; however, the beneficiary does not own the funds in the trust. The trustee has legal ownership of the trust funds. Although the beneficiary, or someone acting on behalf of the beneficiary (e.g., designated advocate), has the right to request payment to vendors by the trustee, the trustee is not required to approve the request. At the same time, however, the trustee has a responsibility to ensure that the trust funds are available for supplemental needs that will improve, to the extent possible, the quality of life of the beneficiary.

The trustee has the duty to be prudent and to safeguard the trust property for the beneficiary. The beneficiary of the trust and their legal representative (such as an agent under a durable power of attorney, guardian or conservator) and the advocate are entitled to an accounting from the trustee.  Distributions from the trust must be limited to those that benefit only the beneficiary and not any other person. If a trust provides benefits to other persons, then it will not be considered a special needs trust, it will become a countable resource, and the beneficiary may lose government benefits.

The trust is drafted in such a way that if the trustee follows certain guidelines, the beneficiary will continue to be eligible for Medicaid and SSI. The Department of Social Services for Medicaid recipients and the Social Security Administration for SSI recipients are notified by the trustee of any deposits made to the trust and of distributions made from the trust. Generally, the following distributions would impact SSI benefits: food, mortgage (principal and interest), rent, real estate taxes, gas, electricity, water, sewer, and homeowner’s insurance and cash payments to the beneficiary. The trustee must be knowledgeable about the complicated and changing rules governing SSI and Medicaid to insure that the disbursements from the trust do not jeopardize these benefits.

Role of the Advocate

An advocate is designated by the grantor (individual funding the trust) and is generally someone close to the beneficiary such as a family member, guardian, conservator, case worker, power of attorney or the beneficiary. The advocate works closely with the trustee in submitting requests for disbursements that will maintain the quality of life for the beneficiary. The grantor can provide a vision for the trust to assist the advocate and trustee in understanding their wishes, and forms are available to assist in this.

Advantages of a pooled nonprofit SNT

  • The funds are pooled allowing for greater investment opportunities; individual sub-accounts are maintained.
  • Staff is experienced and knowledgeable about the needs of people with disabilities and the rules that will protect SSI and Medicaid benefits.
  • There is no minimum amount equired to establish the trust.

Joanne Marcus, MSW, is executive director of the Commonwealth Community Trust (CCT), a national nonprofit organization providing an effective and affordable administration of third party Special Needs Trusts and self-funded Pooled Disability Trusts. For more information, visit, call 888-241-6039 or 804-740-6930, or email

April 2, 2012 at 5:27 pm Leave a comment

Call for Applications to Serve on the Accessibility Advisory Committee

Metro’s Board of Directors wants to hear from people like you.

Our customers with disabilities and senior citizens have a lot to say about our service. More importantly, they have a lot of good ideas to share. Customers with disabilities and senior citizens have a chance to participate in making Metro better. The Accessibility Advisory Committee (AAC) advises Metro on ways to improve Metrobus, Metrorail and MetroAccess.

Metro is currently soliciting applications from customers interested in filling vacancies on its Accessibility Advisory Committee.

We encourage you to apply for membership if you meet the following minimum qualifications:

  • Have a disability or are senior (65+) and regularly ride Metrobus, Metrorail and/or MetroAccess;
  • Live in the District of Columbia, Prince Georges County, Montgomery County, Arlington County, Fairfax City, City of Falls Church, Fairfax County or the City of Alexandria;
  • Are not employed by Metro or a Metro contractor; and
  • Are not an elected official.

Metro’s Board of Directors will select candidates that represent an accurate cross-section of customers who are senior and/ or have a disability and reflect a broad representation of people from different geographical locations in the WMATA service area. Not every applicant will be selected. All applications will be retained for 2 years from the date submitted for future consideration.

If selected, you will advise our Board of Directors. You will attend AAC meetings on the 1st Monday of every month between 5:30 p.m. and 7:30 p.m. and subcommittee meetings on the 2nd and 3rd Mondays from 4 p.m. to 6 p.m. as appropriate. You will have the opportunity to help make a difference in the way Metro serves seniors and persons with disabilities.

Click on the following link to complete the application on-line or download the application at  and mail to

Accessibility Advisory Committee

600 5th Street, NW
Room 7A-01
Washington, DC 20001

or fax it to: 202-962-2722.

You may also request an application form to be mailed, faxed, or e-mailed to you by calling 202-962-1100.  Thank you.



April 2, 2012 at 2:59 pm Leave a comment

ECNV Is 30 Years Old!

It seems like just last week that we celebrated our 25th Anniversary. These last five years have flown by and the older I get the faster the years fly. Five years ago we still resided at 3100 Clarendon Blvd., a great location, but a rent increase made it a lot less attractive.

We enter our 30th year expanding programs and providing increased services to people with disabilities. Recently ECNV qualified to become an Employment Network and will be providing support services in getting people with disabilities into the workforce. We have also redoubled our efforts with the Money Follows the Person (MFP) program to assist those who wish to move from institutions into the community. We have just completed a two year demonstration grant to provide Travel Training (bus and rail) to people with disabilities. It’s a valuable program that we are actively seeking funding to continue and we believe we have been successful in acquiring it. Go to to learn about the Travel Training program and other programs and services.

As we hold or participate in events this year, please join us. As we continue our mission of empowering others with disabilities, be our support in whatever means possible.

April 2, 2012 at 10:52 am Leave a comment

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