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Hot Off the Press! Legislation and Advocacy News


What's New in Legislation? Archives - 2014 and before

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Although you can visit this page for our updated National Advocacy Alerts! you may wish to receive Advocacy Alerts! on your own e-mail. Click on the link above, sign up and stay on top of important legislation.

Contact Your Lawmakers

We encourage you to contact your Representatives and Senators to let them know how you feel about the legislation listed here. To locate your elected officials, visit the House of Representatives online at www.house.gov/ and the United States Senate at www.senate.gov/.

To learn more about the specific measures and bills outlined here, visit The Library of Congress' Thomas Online.

New Sign Advocacy Alert! April 2017 - President's Budget Cuts Programs for Employment, Housing, and Health Care services essential to People with Disabilities

The President has put forth his budget (with details pending) but it is clear that there are proposed cuts to essential programs that serve People with Disabilities. The agenda to employ people with disabilities will take a pronounced defunding in the new budget. The budget eliminates hundreds of federal programs, while adding funding to homeland security and the military. For more information, visit the President Trump's 2018 Budget. The budget will be reviewed and debated by Congress, so there is time to express how employment, housing, transportation and special education programs are essential in your life. For a summary, visit President Trump Targets Office of Disability Employment Policy in Proposed Budget from the National Disability Institute. This article discusses more than the employment issue so be sure to read the article.

New Sign Advocacy Alert! March 2017 - Thank Congress for Saving Essential Care for People with Disabilities!

Speaker Ryan took the American Health Care Act from the floor consideration because there were not nough votes to pass it in the U.S. House. Disability advocacy groups spent a lot of time last month trying to educate our representatives what the Affordable Care Act and Medicaid means in the lives of individuals with disabilities. Thank your Representatives that they recognized the proposed American Health Care Act would have had potentially catestrophic effects on the health of people with disabilities, their ability to work and their providers. Continue to tell your story or if you didn't get a chance to educate your representative on how Medicaid assists you, please take the time now. It is important to keep reminding them as pressure to fund new agendas such as tax reform and infrastructure could seek to use Medicaid funding once again in the near future.

New Sign Advocacy Alert! March 2017 -What will YOU do without your Medicaid Program, YOUR Healthcare or Care Supports? Tell Congress to Save Essential Care for People with Disabilities! American Association of People with Disabilities (AAPD) Strongly Urges You to Get Involved to Urge Congress to Save the Community First Choice Option and other Provisions of the Affordable Care Act that improved health care for people with disabilities! and Stop cuts to Medicaid in the new American Health Care Act for the health and well being of you and other people with disabilities!

"The Community First Choice Option (CFCO) was the result of decades of advocacy by the Disability Community! A stand-alone program passed along with the Affordable Care Act (ACA), CFCO enables many disabled people to live in the community. Proposals to repeal the ACA have eliminated CFCO without any discussion. Repeal of the ACA, would also eliminate accessibility standards for Medical Diagnostic Equipment and insurance protections for people with pre-existing conditions. These advances in the rights of disabled people should not become collateral damage to politics."

Congress is planning to repeal the ACA and make changes that will cut Medicaid. People's health, services and lives are at stake!

How will the new American Health Act affect you? Visit the AAPD article, Action Alert! Tell Congress to Save Healthcare Provisions that are Essential to People with Disabilities

Losing home and community-based services and supports. Waiting lists would quickly grow.

Losing other critical services such as personal care, mental health, prescription drugs, and rehabilitative services. If funds become scarcer, states may decide to stop providing these services altogether.

Being forced into unnecessary institutionalization. States could return to the days of “warehousing” people with disabilities in institutions.

Shifting the costs to individuals or family members to make up for the federal cuts. The costs of providing health care and long-term services and supports will not go away, but will be shifted to individuals, parents, states, and providers.

Urgent - What Can You Do?

Contact your local and federal legislators, by calling 202-224-3121. Urge them to keep the Community First Choice Option in any ACA replacement."

Reach out to your Federal and state legislators and the Governor’s office in your state and tell them how repealing the ACA and replacing it with a plan that CUTS Medicaid will affect you. People's health, services and lives are at stake!

Read the Consortium for Citizens with Disabilities article New URGENT CCD Action Alert ACA and Medicaid for how to contact your legislators and explain the importance of Medicaid and the ACA for you and people with disabilities.

Or Use the Following Links and Letters to Help You Send Your Message:

Organization sign-on letter urging Congress to save disability-specific provisions in the Affordable Care Act.

Individual email to Members of Congress urging them to keep the Community First Choice Option in any ACA replacement.

Want to Learn More?
There are other provisions of the ACA that if repealed could cause critical lack of health care for those most in need - people with disabilities in our communities.
Visit the Consortium for Citizens with Disabilities article People with Disabilities Benefit from the Affordable Care Act .

New Sign Advocacy Alert! February 2017 - Medicaid Block Grants: Why Long-Term Care Programs Give Me My Arms, Legs, and So Much More.

Right now, with the repeal and replacement of the Affordable Care Act (ACA), legislation is being proposed to introduce Medicaid block grants. These block grants could mean cuts to programs like the ones I use to live my day to day life, as well as many other programs that so many of us rely on. (To learn more about block grants and what it could mean for you, click here.) If you know me, you know I’m not one to get very loud about advocacy, but now is the time to act. Contact your representatives, share your voice, share your story. This isn’t just about budgets and taxes, this is about humanity and the right–my right–to live my life how I want and need to. This isn’t just a job, it’s my life. Read our blog!

New Sign Advocacy Alert! February 2017 - Medicaid Block Grants: What They Are and How They Could Impact You?

Chances are, you or someone you love relies on Medicaid for any number of services; routine health care, personal aides, or health therapies, just to name a few. Perhaps you’ve heard rumblings recently about some proposed changes to Medicaid; specifically, the idea of changing the way in which Medicaid services are funded by the Federal government. It's called block granting and here's what it could mean for you.

What is a Medicaid Block Grant?

A block grant is essentially a lump sum payment to states, shifting direction away from the Federal Government and instead allowing state governments to direct services as they see fit. Proponents of block grants believe this flexibility will lead to "innovation." It's important to note however that most block grant proposals start with significant reductions in federal spending. Congress’ most recent 2016 proposal would cut $1 trillion from Medicaid, or one third of the program budget over the next decade.

So what does this mean?

This means that over time, states would have less money to work with, leaving Governor's with two options: (1) create revenue (read: raise taxes) to meet existing demand or (2) cut services and/or eligibility.

What could Medicaid Block Grants Mean for You?

Unless your state has a plan to make up for the reduced federal spending, the risk for fewer services and personalized options is high, particularly if you use Medicaid for community-based, self-directed care. This could mean that you would have to rely more heavily on family members for care. If you don't have family to help, then possibly agencies (or worst case scenario, institutions) that can provide unpredictable care. Of course a myriad of other services could be impacted as well, such as day programs, therapies, rehabilitation, etc.

What Can You Do?

Contact your local and federal legislators and tell them why you need Medicaid, what role Medicaid plays n your life. Share your story. Ask them to ensure that the services that 1 in 5 Americans need to remain independent are not compromised. Connect with your legislators via USA.gov/elected-officials

Want to Learn More?

Read this excellent Op-Ed by Barbara Beckert of Disability Rights Wisconsin - Medicaid Block Grants Could Hurt Wisconsi. While the impact of block grants will vary by state, this Op-Ed gives an important glimpse into what could happen.

To stay on top of important developments, please Follow us on Facebook

New Sign January 2017 - Executive Director of the National Disability Institute, Michael Morris, sent An Open Letter to President-elect Trump on Behalf of Americans with Disabilies through the Huffington Post on November 14, 2016

He acknowledges what doesn't need to change and what does need to change and asks that the President-elect will realize that the "public benefits of Social Security, food assistance, and Medicaid for healthcare and home and community-based services provide an essential safety net for survival for millions of Americans with disabilities." "Your presidency will be defined by your ability, in words and actions, to build pathways to a better economic future for all, including individuals with disabilities." Visit this letter on the Huffington Post at the link above.

New Sign January 10, 2017 - Be a part of President Obama's Farewell Address from McKormick Place, Chicago, Illinois

Would you like to attend the event in Chicago? or watch it live on-line? Visit Farewell Information

Are you one of the 150,000 people with disabilities who have been hired by the Federal government. Have you found employment because of the employment initiatives for federal contractors? Are you a student who has benefited from ESEA and IDEA bolstering education of students with disabilities? Have you been able to access Disability.gov and other government websites because of the access to technology initiatives? Have you benefitted from the Affordable Care Act with Money Follows the Person, Community First Choice Option attendant care services, or Community Living Assistance Services and Supports? Will you benefit from access across the world with the UN treaty for People with Disabiities? These are just a few of President Obama's disability initiatives and support of disability rights to access our world.

Visit the website to share your story of inspiration and "Yes, We Can" spirit of the last 8 years! Fill out the form or share on social media under #YesWeCan. Your story may be featured at WhiteHouse.gov or social media.

What has President Obama done for people with disabilities? Visit this press release and youtube video at WhiteHouse: Issues: Disabilities

New Sign December 13, 2016 - 21st Century Cures Act - is signed into law with bipartisan support

President Obama signs 21st Century Cures Act This Act will accelerate research for cancer, Alzheimer's and other brain diseases, help with mental illness aimed at preventing suicide, and fight opioid addiction. For another summary, see the Every Life Foundation article Updated Consensus Draft of 21st Century Cures Act Expected to Advance This Week, OPEN ACT Dropped From Bill.
To understand more about this Act, see Who wins and loses with the 21st Century Cures Act? article by PBS Newshour by Sheila Kaplan from Dec. 6, 2016.

2016 December 3 Graphic of International Day People with Disabilities

December 3rd 2016 - United Nations International Day of Persons with Disabilities (IDPD)

Did you know that the United Nations International Day of Persons with Disabilities (IDPD) has been celebrated annually on the 3rd of December around the world since 1992. This year’s objective is “Achieving 17 Goals for the Future We Want”. This theme notes the recent adoption of the 17 Sustainable Development Goals (SDGs) and the role of these goals in building a more inclusive and equitable world for persons with disabilities.

10th Anniversary of the United Nations adoption of the United Nations Convention on the Rights of Persons with Disabilities. (U.S. Congress yet to ratify)

This is the 10th Anniversary of the U.N. adoption of the U.N. Convention on the Rights of Persons with Disabilities. (Unfortunately the U.S. Congress has yet to ratify this Disabilities treaty, although it had non-partisan support in 2013 and 2015.) Continue to press your U.S. Congressman to take up and ratify this treaty and the right to serve, study, work and travel abroad.

There are 51 million Americans that would benefit from the U.S. taking leadership on this issue. Although ratifying would not change one thing in American law or add a penny to our budget, the treaty was not ratified by the U.S. Congress sending a disassociation message to Americans with disabilities. We salute John Kerry and the many members of Congress who agreed with him. For more of his inspiring message, visit People Making a Difference Secretary of State, John Kerry - Testimony Before the Senate Foreign Relations Committee on the Disabilities Treaty

Advocacy Alert! November 2016 - Send President Obama a Thank You!

- Do you have a story to tell President Obama, for protecting those with disability against discrimination and expanding opportunity for those with disabilities?

Have you had a chance to thank President Obama for his work to protect and expand opportunity for people with disabilities?

Send President Obama a thank you at Contact the WhiteHouse

Advocacy Alert! November 2016 - "Until every American with a disability... - President Obama

“Until every American with a disability can learn in their local public school in the manner best for them, until they can apply for a job without fear of discrimination, and live and work independently in their communities if that's what they choose, we've got more work to do. As long as we as a people still too easily succumb to casual discrimination or fear of the unfamiliar, we've still got more work to do.”" - President Barack Obama, July 26, 2010

What are some of the most important protections and opportunities President Obama has accomplished for us as citizens with disability in this great country.

Visit this press release and youtube video at WhiteHouse: Issues: Disabilities

"The President is committed to nurturing a society that values the contributions of all of our citizens and residents, including the approximately 50 million people in this country living with disabilities .....

Today, 19 percent of Americans (56.7 million people) live with disabilities. President Obama and his Administration are dedicated to ensuring that people with disabilities have the same access to the American Dream as every other citizen.

That's why his Administration has worked to toughen the protections against disability-based discrimination, increase accessibility in our communities, expand employment opportunities and increase financial independence for people with disabilities."

2016 Go Vote


Advocacy Alert! November 2016: Get Out and Vote! LIving in a democracy is a great privilege.

True independence can only be achieved in a democracy where you have choice.

Making a choice requires access to information.

Access to information is not possible without freedom of information.

Ultimately, our right to independence is only achievable if we all make our voices heard by exercising our right to VOTE!

Get Out and VOTE!

November 2016: AAPD: 2016 Presidential Candidates Disability Questionnaire

The American Association for People with Disabilities (AAPD) has received answers from the major Presidential Candidates. Questions on issues that matter to YOU and all of us in the disability community were asked in detail of the candidates. This is a good way to understand how each candidate will deal with the issues that matter to YOU. They list responses next to each other in a comparison. There is also a list of sites where current Presidential candidates have expressed their stance on disability. See a comparison of about disability issues at Disability Positions of the 2016 Presidential Candidates.

Here is an article from the NY Times Hillary Clinton Outlines Vision of More Job Opportunities for People With Disabilities .

For more information on Voting Smart visit our Election 2016 Report

September 27, 2016: National Voter Registration Day

National Voter Registration Day is there to assist you if you haven't registered to vote. Click on this link and you can register to vote or visit your clerk's office to register to vote. Register any day now as soon as you can.

If you procrastinate, you may miss the deadline for registration in your municipality. See President Obama's Proclamation or visit our NHU blogs on voting on how important taking part in our democracy is for people with disabilities. Educate yourself on the issues and let the candidates know that your life and voice matter! It's time to take back our Democracy and let our elected officials know that they are accountable to you, as a voting American Citizen! Visit our Election 2016 Report

March 2016: New Guide from the U.S. Department of Labor on how to pay Home Care Workers

If you hire Home Care Workers be sure to check out this new guide: Paying Minimum Wage and Overtime to Home Care Workers: A Guide for Consumers and their Families to the Fair Labor Standards Act This guide is meant to help individuals, families, and households that use home care services determine their responsibilities under the Fair Labor Standards Act (FLSA), the federal minimum wage and overtime law that applies to most home care workers. This guide includes a checklist for paying home care workers correctly whether you directly hire, you have the home worker live in-home and directly hire or you hire through an agency or non-profit organization.

February 2016 -- Let your candidates know that your life and voice matter! Election 2016 Report to Help Voters with Disabilities

If every eligible voter with a disability turned out to the polls this year...we would have a very different country on our hands. Educate yourself on the issues and let the candidates know that your life and voice matter! It's time to take back our Democracy and let our elected officials know that they are accountable to you, as a voting American Citizen! Visit our Election 2016 Report

February 5, 2016 -- ABLE Implementation 2016 Webinar

Register now to be informed for the ABLE National Resource Center ABLE Implementation 2016 Webinar February 5, 2pm (Easern) time.

January 2016 -- 16 million people living in poverty also have a disability.

The National Disability Institute (NDI) joins with individuals and other organizations who are raising awareness and calling attention to the poverty epidemic in America. At a time when one in six Americans live in poverty, as do one in three with a disability, and the disability poverty rate is two times the national average, they are working to reverse this troubling trend. NDI is working to ensure all people, with and without disabilities, have the opportunity to take steps toward a more financially independent life with the tools necessary to build an even brighter economic future. This month, NDI renews its commitment to creating a world where every individual has the opportunity to achieve financial independence. Join the Real Economic Impact

2016 Federal Budget - $137,000 Increase for Mental Health

2016 Federal Budget includes important new investments in mental illness research and services including "set aside" funds for early intervention, First Time Psychosis, biomedical and services research at NIMH for the causes of mental illness and new treatments, and investments in vital services and supports that can prevent negative consequences such as homelessness and incarceration. The Budget includes an increase of $58 million, to total $185 million, within the Centers for Disease Control and Prevention and the Substance Abuse and Mental Health Services Administration for the President’s Now is the Time initiative to make sure students and young adults get treatment for mental health issues, and provide nationwide data to better understand how and when firearms are used in violence deaths and inform future research and prevention strategies.

21st Century Cures Act (HR 6) - Help and Hope for Patients Through Biomedical Innovation passed the House

From the Committee on Energy and Commerce, Chairman Fred Upton, the 21st Century Cures Act hopes to streamline, and allow more sharing of information for research to find cures to some of the diseases that will cost our society great deal of money in future decades unless we find cures today. The pace of scientific advancement over the past two decades, including the mapping of the human genome, has been impressive, giving usa myriad of genetic clues about the underpinnings of disease. Translating these discoveries into new treatments for patients, however, has proven to be difficult. HR 6 accelerates the discovery, development and delivery of life saving and life improving therapies,and transforms the quest for faster cures. The danger will be if drugs are not given ample testing for safety purposes. The good side will be we can bring the medical innovations into the 21st century technology.


Visit www.NationalVoterRegistrationDay.org to get registered, find local events, and learn how you can help get out the vote!

Advocacy Alert! SEPTEMBER 11, 2015 -- Do you want your own access to the Special Needs Trust set up on your behalf?

The U.S. Senate has approved legislation for a bill that would allow individuals with disabilities to establish a special needs trust for themselves. Under current law special needs trusts are set up by a parent, grandparent, legal guardian or a court and the individual cannot set up or access the account. Money saved within these trusts do not count against an individuals asset limit for government benefits of Medicaid and Supplemental Security Income. Senator Chuck Grassley, R-Iowa, has sponsored the bill, the Special Needs Trust Fairness Act. The House of Representatives is considering a similar bill. Write your representative today about your interest in accessing your own assets without having to rely on a family member or the courts.

June 19, 2015 - U.S. Department of Education Department announces new National Center for Information and Technical Support for Postsecondary Students with Disabilities

This new center shall provide technical assistance and information on best and promising practices for students with disabilities as they transition to or attend postsecondary education. Institutions of higher education, as well as elementary and secondary schools, have legal obligations under two civil rights laws prohibiting disability discrimination, section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794) and the Americans with Disabilities Act of 1990 (ADA) (42 U.S.C. 12101-12213). The technical assistance and information provided by the Center can help students, parents, and educational officials in determining how to meet these obligations and ensure the rights of students with disabilities. When attending institutions of higher education, students with disabilities do not have the same rights and protections they had in secondary school under section 504 and the Individuals with Disabilities Education Act (IDEA), 20 U.S.C. 1400 et seq., for eligible children with disabilities. The center will assist to understand the differences in these rights and responsibilities as students enter college and pursue postsecondary education. Specifically, unlike students in secondary school, postsecondary students are responsible for requesting the academic adjustments, auxiliary aids and services, and other accommodations they need in order to succeed, and are expected to comply with reasonable requirements that an institution of higher education may have concerning documentation of disability and the need for accommodations under section 504 and the ADA.

February 15, 2015 - Administration for Community Living FY 2016 Budget Request to Congress

The Administration for Community Living has issued their budget request to Congress for Fiscal Year 2016. ACL was formed in 2012 to place both people with disabilities and older adults under one agency and help them to live independently and participate fully in their communities. Hence the name is no longer Older Adults or Disability but focused on giving community supports to both populations. This is good for people with disabilities as their community support was dwindling in lieu of the monies spent on older adults in the U.S. This budget reflects the recognition of the cross aging and disability focus on community living, and the fact that Congess has transferred additional programs to ACL including the National Institue on Disability and the Assistive Technology Programs from the Department of Education. Visit the FY 2016 ACL Budget Statement for more information.

Advocacy Alert! January 2015 - Congress forces debate on future of Social Security benefits

In a little publicized move, on the first day back in session, the new Congress passed a parliamentary rule that will prevent the shifting of funds from the Retirement Trust to the Disability Insurance Trust in favor of a system overhaul (details remain to be seen). This shifting of funds is nothing new. In fact, Congress has elected to shift funds 11 times since the 1950s, including in 1983, when Congress transferred funds from the Disability Insurance Program to the Retirement program. The Social Security Administration reports that both funds will remain solvent through 2033, with a shift in funds.

In case you haven’t heard, the Social Security Disability Insurance program will have a shortfall of funds in 2016, leading to a 19 percent reduction in benefits for our nation’s most vulnerable population. Your action is needed! Download our paper to learn why we are against cuts to Social Security! Then, contact your representatives and the President and demand that your voice is heard!

Advocacy Alert! January 2015 - The National Disability Institute advocates to contact your state Governor's office and state legislators to set up an ABLE savings account program in your state

After the Treasury Department establishes the rules, your state will be able to set up a program for ABLE accounts for people with early onset disabilities. States can opt out and contract with another state to offer the program so it is important to contact your state representatives to let them know this program is important to you! The ABLE savings account will allow individuals to supplement that which assistance will not cover for accessible housing and transportation, personal assistance services, assistive technology and health care not covered by insurance, Medicaid or Medicare. You will have the option to save up to $14,000 in a tax-free savings account, eliminating the $2,000 asset cap SSI and SSDI beneficiaries face. For more information, visit this video on Ten Things You Must Know About ABLE Accounts and ABLE Account Planning: Six Next Steps for 2015 Be careful with the 6th step which is to start saving. We do not recommend this until we find out more about regulations of accounts as you do not want to lose your benefits.

December 16th, 2014 - the U.S. Senate overwhelmingly passed the Achieving a Better Life Experience (ABLE) Act of 2014 by a vote of 76 to 16. - Important Legislation for people with disabilities and their families, for the option to save up to $14,000 in a tax free savings account, without losing public assistance.

Achieving a Better Life Experience (ABLE) Act will allow people with disabilities (with an age of onset up to 26 years old) and their families the opportunity to create a tax-exempt savings account that can be used for maintaining health, independence and quality of life. In the past if you were born with Cerebral Palsy or Spina Bifida you were only allowed to keep $2000 to maintain eligibility for public assistance. Your parents could not save for costs related to raising a child with significant disabilities or a working age adult with disabilities. The ABLE savings account will allow individuals to supplement that which assistance will not cover for accessible housing and transportation, personal assistance services, assistive technology and health care not covered by insurance, Medicaid or Medicare. You will have the option to save up to $14,000 in a tax-free savings account, eliminating the $2,000 asset cap SSI and SSDI beneficiaries face. This could finally mean financial freedom!! The individual states will need to set up an ABLE program and hopefully you will be able to set up an account by the end of 2015. See the National Disability Institute's article on the passage of this bill.

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