VA Expedites Access to Housing Grants for Veterans with ALS!

This afternoon, the Department of Veterans Affairs announced that veterans with ALS and those on active duty automatically are eligible for Specially Adaptive Housing (SAH) Grants. The grants provide veterans with up to $68,000 to adapt their homes. 

This is a significant change to the SAH program that will enable veterans with ALS to access these grants much sooner than under the current system. In fact, the VA estimates that the change willreduce the time it takes to obtain a grant by approximately 12 months!

This latest action builds on previous VA policies that The Association has championed, including establishing ALS as a service-connected disease and providing a minimum 100% disability rating for those service-connected with ALS.

The Association worked with several Chapters, including the DC-MD-VA Chapter and the Evergreen Chapter, to advocate to the VA the need to change the SAH program so that it could respond to the needs of veterans with ALS, who too often would lose their fight with the disease before they could complete the lengthy SAH grant process.

The Association applauds the VA for continuing to serve our military heroes with ALS.

Five resolutions to help cope with ALS

Five resolutions to help cope with ALS - By Barbara Bronson Gray, RN, MN

Nancy Sterling, a 58-year old Maryland physical therapist with ALS, suggests five resolutions for others with the disease:

1. Plan for some fun. It doesn’t have to be anything major, Nancy says. Gathering friends and family for just about any reason can be fun. For example, she has friends come over for a “dinner and a movie” night every month. The meal is pot luck. Although she gets her nourishment through a PEG (stomach) tube, she enjoys seeing and smelling the food.

Nancy has a friend with ALS who had a leaf raking party. He’s a singer, so many of his friends serenaded him while they gathered leaves. Nancy, who was a singer, too, enjoys having four friends rehearse at her house on Sundays after church, giving her caregivers a chance to get out for a while. The quartet asks her for coaching, which she loves to give – through her DynaVox (a speech-generating device).
Nancy says she loves to go to the theater:  “I feel normal there.” She can sit and watch the movie just like everyone else, she adds.

And don’t forget to consider travel.  “Your ALS Association care coordinator can help you contact the local chapter at your destination and may be able to help you borrow equipment to use while you’re there,” she suggests. “I was able to borrow scooters in Dallas, Calgary and Ft. Lauderdale.” When Nancy went to Hawaii, she brought her own power chair but borrowed a commode/shower chair and a walker. She was also careful to reserve handicapped-accessible hotel rooms.

2. Read the books and watch the movies you’ve always wanted to get to.  Whether opening up a valued tome or using an e-reader or a computer, reading is relaxing, stimulating, eye-opening, and a terrific diversion, Nancy says. You can also enjoy books on tape, get a book on your DynaVox, or control a CD player with the speech-generating machine. Or have a friend come and sit by the fire, and read to you the old-fashioned way, for a little fellowship!

Nancy uses a special pillow to prop a book or an e-reader up on her lap at just the right angle. She recommends one made by Hog Wild. “It holds the book up for you so your arms don’t get tired, something that's especially importantPillow Book Holder for a reader with ALS,” Nancy says. The pillow is available at amazon.com.

For movies, she suggests scouring the offerings on Redbox, Netflix, Amazon, and local cable stations. Whether you prefer musicals, comedies, dramas, mysteries or even documentaries, there are literally thousands of options.

Pillow Book Holder3. Plan ahead. Nancy recommends that people with ALS strongly consider “banking” their voice in case they lose the ability to speak.  If you bank your voice, you’ll be able to say what you’d like – in your own voice – with the help of a speech-generating system. Talk with a speech therapist or your ALS Association technology specialist about how to record your voice.

4. Practice gratefulness.  That can be tough to do when you’re dealing with a condition like ALS, Nancy admits, but she finds actively giving thanks helps her keep her perspective. “There is always something to be grateful for,” she says. Some people keep a gratefulness journal to help remind them of the good things happening in their lives when they’re blue, she notes.  “I thank God every day for the gifts I have been given: my ability to communicate with the speech-generating device, my family, my caregivers, the beauty of a full moon, the birds that come to the feeders just outside my window, and the friends who have helped me adapt to the many changes ALS brings and still love me anyway!”

Nancy has also started writing to people who have influenced her life: her high school principal, to thank him for her education; a fellow swimmer who once befriended her; her swimming coach, to tell her how much her encouragement means to her now; and others. “Those emails have a ripple effect, sending good wishes back to me. You never know how much other people might need to hear what you say to them!”

5. Give back. Whether you decide to participate in the ALS registry, form a Walk to Defeat ALS® team, or find a clinical trial you could be part of, doing something to help understand and fight ALS not only allows you to make a big difference, but it is rewarding, Nancy says.

A Budget Without Vision - By Dana Milbank, Published: March 4

A Budget Without Vision - By Dana Milbank, Published: March 4

When White House press secretary Jay Carney led a quartet of President Obama’s top advisers into an auditorium for the annual rollout of the budget Tuesday, only 40 of the room’s 120 seats were occupied — and several of the reporters there had come to ask Carney about Ukraine.

It didn’t take long to exhaust questions about the budget. “Way in the back there!” Carney called out, spotting a raised hand in the very last row. “It’s okay,” the press secretary quipped to the questioner. “There were no seats up here.”

“Budget Day,” the annual rollout of the president’s budget proposal for the next fiscal year, is usually a big deal in the capital. But not this year. By universal agreement, Obama’s budget is dead on arrival on Capitol Hill — and the White House wasn’t really pretending otherwise. Instead of offering a proposal that would be the basis for negotiations with lawmakers, White House officials drafted a document that would do Democrats no harm in the 2014 elections.

Gone was the proposal from a previous Obama budget to restrain the growth of Social Security costs. Missing was any major proposal to fix the huge long-term deficits in Medicare. Included: $1 trillion in tax increases on business and the wealthy over 10 years, and a wish list of government initiatives, with names such as “Opportunity, Growth, and Security Initiative,” “ConnectEDucatos ” and “Climate Resilience Fund.”

Gene Sperling, who is stepping down this week as Obama’s top economic policy adviser, announced: “This is a pro-growth and pro-opportunity budget.”

The problem is, it’s also a pro forma budget.

There is logic to the White House’s approach: If any budget Obama produces isn’t going to be taken seriously in Congress, he might as well propose one that won’t be a liability in this fall’s midterm campaigns. But this approach is also a surrender — an acknowledgment that the president isn’t even going to engage.

To be sure, Obama has little control over many of the factors causing his budget to be irrelevant this year. The budget deal negotiated by Rep. Paul Ryan (R-Wis.) and Sen. Patty Murray (D-Wash.) in December sets spending limits for 2015 — and Murray’s Senate Budget Committee isn’t even going to draft a budget this year, which means there can be no congressional budget resolution.

Yet Obama’s budget confirmed his irrelevance by retreating from any serious attempt at reforming entitlement programs. Those programs are swelling and will grow exponentially in coming years, crowding out everything else government does, including defense spending and social programs.

The Obama plan floated the possibility of spending an additional $56 billion in 2015 beyond the Ryan-Murray accord. But even if all of the White House spending requests and tax increases were enacted, discretionary spending as a percentage of the budget would still be at a 50-year low.

At the briefing, The Post’s Zachary Goldfarb asked budget director Sylvia Mathews Burwell whether she thought that 50-year low is a success or a failure. “The proposed president’s budget is the right level over the 10-year period,” she replied.

That means Obama has essentially embraced as permanent the spending cuts forced on him by congressional Republicans — and has abandoned the sort of tough choices on entitlements that would free up more funds for the domestic programs he would like to see.

Last month, a group of liberal senators asked Obama not to cut entitlement benefits in his budget. He listened — and his political base will no doubt be pleased with that short-term victory. But it comes at the cost of abandoning other things liberals would like to see.

At Tuesday’s briefing, the Obama advisers spoke of his “vision” so much that they might have been at an ophthalmology convention: “the president’s vision of making access to high-quality preschool available ... the president’s vision for moving the country forward. ... a down payment on that vision ... the president’s vision for high-school redesign ... the president’s vision with respect to higher education ... a budget [that] is going to represent the president’s vision.”

CNBC’s John Harwood asked Sperling to speculate about when the next budget negotiations would take place. “Clearly, they’re not going to take place this year,” Harwood said. “Do you expect that that will happen next year? Or is that something for the next” president?

Sperling declined to say, instead referring again to “what you see in the vision of the president’s budget.”

But the president’s visions will remain only that if his budget isn’t taken seriously.The Obama plan floated the possibility of spending an additional $56 billion in 2015 beyond the Ryan-Murray accord. But even if all of the White House spending requests and tax increases were enacted, discretionary spending as a percentage of the budget would still be at a 50-year low.

At the briefing, The Post’s Zachary Goldfarb asked budget director Sylvia Mathews Burwell whether she thought that 50-year low is a success or a failure. “The proposed president’s budget is the right level over the 10-year period,” she replied.

That means Obama has essentially embraced as permanent the spending cuts forced on him by congressional Republicans — and has abandoned the sort of tough choices on entitlements that would free up more funds for the domestic programs he would like to see.

Last month, a group of liberal senators asked Obama not to cut entitlement benefits in his budget. He listened — and his political base will no doubt be pleased with that short-term victory. But it comes at the cost of abandoning other things liberals would like to see.

At Tuesday’s briefing, the Obama advisers spoke of his “vision” so much that they might have been at an ophthalmology convention: “the president’s vision of making access to high-quality preschool available ... the president’s vision for moving the country forward. ... a down payment on that vision ... the president’s vision for high-school redesign ... the president’s vision with respect to higher education ... a budget [that] is going to represent the president’s vision.”

CNBC’s John Harwood asked Sperling to speculate about when the next budget negotiations would take place. “Clearly, they’re not going to take place this year,” Harwood said. “Do you expect that that will happen next year? Or is that something for the next” president?

Sperling declined to say, instead referring again to “what you see in the vision of the president’s budget.”

But the president’s visions will remain only that if his budget isn’t taken seriously.