Friday, May 10, 2013
Federal Focus - May 2013
Tell Congress to Strengthen Long-Term Care
The Society is working closely with other organizations concerned with the lack of affordable, flexible long-term care options in our country. As part of that effort, we encourage activists to sign this online petition. It asks that Congress re-evaluate current long-term services and supports options and create broader access to address the growing need.
As part of the health care reform law, Congress created a voluntary long-term insurance program that would have provided a cash benefit to people who become functionally or cognitively impaired. This provision could have helped people maintain their independence and remain living in their communities. The Society and many other advocacy organizations supported this program but it was eventually deemed financially unsustainable and was repealed. In its absence, Congress has established a bipartisan Long-term Care Commission that is tasked with developing policy recommendations to strengthen long-term services and supports. Even though the Commission members have been appointed, it has not yet met formally and it is unclear when they will begin their important work.
Congress needs to hear about how important this issue is and that’s why we encourage you to sign the online petition. About a quarter of people with MS will require long-term care at some point in their lives, when the symptoms become particularly severe and/or the disease has significantly progressed. Family members often become the primary providers of care, but people with MS also rely greatly on home health care workers, personal care attendants, other community supports, adult day achievement centers and residential settings. This online petition advocates for a broad array of options for people—from home- and community-based services to residential—and stresses that the options be affordable. Currently, too many people are forced to spend down into poverty in order to access these vital services. Be sure to sign the petition today!
MS Research Funding Victory in FY 2013 Budget, as Congress Begins FY 2014 Appropriations Work
In late March, Congress and the President agreed to a continuing resolution, which will fund the federal government through the end of Fiscal Year (FY) 2013. Shortly after this agreement was made, the Society received word from the Department of Defense that the Congressionally Directed Medical Research Program for MS received $5.0 million, a $1.2 million increase over FY 2012! Given the federal budget issues, this is a huge accomplishment for the MS community. This 30 percent increase can all be attributed to the hard work of MS activists over the past year, as they repeatedly contacted their Members to ask them to support this level of funding. Congrats MS activists!
With FY 2013 funding levels decided, Congress has started the appropriations process for FY 2014. As part of this, over the past few weeks, MS activists worked hard asking their members of Congress to support funding for MS research through the National Institutes of Health (NIH) and the CDMRP, as well as funding for the Lifespan Respite Care Program on letters that are sent to the Appropriations Committees. This year, MS activists helped garner impressive support: 168 members of the U.S. House of Representatives and 52 U.S. Senators support funding for the NIH, 56 Representatives and 8 Senators support MS research funding in the CDMRP and 35 Representatives support funding for Lifespan Respite (there was no Senate Lifespan Respite letter). Excellent work, MS activists!
We will update you as the appropriations process continues with other opportunities for action.
International Disability Rights Treaty Update
The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is expected to receive new hearings in the Senate Foreign Relations Committee, possibly as early as the week of May 20th. This is the same treaty that the Society pushed heavily during the previous Congress and that MS activists around the country reached out to their Senators asking them to support. Now, since it is a new Congress, the process needs to start over—beginning with the Senate Foreign Relations Committee.
The Society continues to strongly support the treaty. Currently, we are focusing advocacy efforts on highlighting the positive impact the treaty will have for Americans with disabilities, and the benefit to American businesses by opening additional markets for American made goods, which will spur new economic growth. Additionally, the CRPD will help create a level playing field between U.S. businesses that are ADA compliant and businesses in other countries that currently do not have comparable workplace standards. Stay tuned for opportunities to take action and help move the CRPD forward to ratification
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About Me
- Steve
- North Grafton, Massachusetts, United States
- Well-educated, disabled at this point with Multiple Sclerosis. I am very glad that I was able to do the things that I have been able to do over the years. had to change the picture, this one's more realistic.