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Disability Legislation and Advocacy News: National and Around the World

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

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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/

Call your Senators

Call the Capitol Switchboard at (202) 224-3121 and ask to be connected to your Senators.

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

New Sign Advocacy Alert! May 2019 - Wisconsin's Congressman Jim Sensenbrenner reintroduces U.S. bill H.R. 555 and Senator Chuck Schumer S.117 (the Disability Integration Act) to ensure community supports for people with disabilities. Contact your Legislators to help co-sponsor!

Visit this article from Disability Integration Act.org - Sensenbrenner Reintroduces the Disability Integration Act to read his comments on reintroducing this act to support Seniors and People with Disabilities to live in their communities rather than nursing homes. Here in Wisconsin we know community integration for people with disabilities works for everyone including taxpayers.

New Sign Advocacy Alert! May 2019 Tell your Members of Congress you support the Newborn Screening Saves Lives Reauthorization Act. Every Life Foundation for Rare Diseases is asking you to ask your legislators to cosponsor this legislation!

A bill to reauthorize the Newborn Screening Saves Lives Act was introduced in the House of Representatives by Representative Lucille Roybal-Allard (CA) on May 2, 2019. Introduction in the Senate is expected soon. H.R. 2507, the Newborn Screening Saves Lives Reauthorization Act, will continue critical federal programs that provide assistance to states to improve and expand their newborn screening programs, support parent and provider education, provide a path for new conditions to be added to the federal RUSP, and ensure laboratory quality and surveillance for newborn screening. Without enactment of this legislation, authorization for these programs will expire at the end of Fiscal Year 2019. For more information on this bill. Follow this easy way thru Every Life Foundation to ask your representatives to co-sponsor this legislation.

New Sign February 2019 - 2020 Presidential Candidates from #CripTheVote for disabled voters and disability activists

Primary season will be in full swing before we know it. Here's a handy list of declared and potential Presidential Candidates from #CripTheVote, a non-partisan blogspot. Who's your favorite? 2020 Presidential Candidates They are starting this Presidential Candidate Resource to make essential information on 2020 presidential candidates available to disabled voters and disability activists. Their goal here is limited. They just want a single page where you can find basic information on each declared and potential candidate. A little later on in the campaign they will add some more information on their disability-related positions and practices. Check back on this bolgspot throughout the campaign.

New Sign December 2018 - Tribute to President George H.W. Bush who in 1990 signed the ADA into Law

Today we offer our sincere sympathy to the Bush Family and pay tribute to President George H.W. Bush who passed this week in Texas. It is important to remember who paved the way for modern access and accommodation for people with disabilities. No doubt we still have work ahead to create a truly accessible society, but in 1990 George H.W. Bush, with his signature of the Americans with Disabilities Act, fueled the disability rights movement for decades to come. Of course this was also possible because of the tireless work of countless disability advocates of the 1970s and 80s. Together, with President Bush, they made history, and society a little more accessible. Thank you for your service Mr. President to a grateful nation. Rest easy knowing that your work continues with a new generation of advocates.

"Together, we must remove the physical barriers we have created and the social barriers that we have accepted. For ours will never be a truly prosperous nation until all within it prosper."

– President H.W. Bush at the signing of the Americans with Disabilities Act

New Sign Advocacy Alert! October 24, 2018 - Cuts to Medicare, Medicaid and Social Security will happen according to Mitch McConnell! Vote for candidates who support your benefits programs!

Here is an article that states Cuts to Medicaid, Medicare and Social Security (from Newsweek, October 24, 2018) WILL happen if we do not elect representatives that believe in preserving the safety nets for our most vulnerable and working citizens. These are all programs that the average citizen pays into with their tax dollars. And now, it's at risk, as the deficit soars after making massive tax cuts and huge defense spending and lawmakers aim to balance the budget. We must take a measured, bipartisan approach and not balance the budget at the sole expense of the poorest, sickest and working families in our nation.

Will you be voting on November 6th? Find the disability issues, how to vote smart, how to become more news literate, and how to spot fake news in your social media in the voter checklist on our home page!!!

New Sign Advocacy Alert! October 2018 - The Art and Importance of Choosing Your Elected Officials

Here is great article and all the resources you need to choose your elected officials for November - check out our editorial blog The Art and Importance of Choosing Your Elected Officials Find the disability issues, how to vote smart, how to become more news literate, how to spot fake news in your social media and a voter checklist!!!

New Sign Advocacy Alert! September 2018 - Write your Senator to oppose the nomination of Judge Cavanaugh and uphold your disability rights

The American Association for People with Disabilities (AAPD) has asked people with disabilities to stand for their civil rights by writing their Senators to oppose the nomination of Judge Cavanaugh "based on his previous rulings as a DC Circuit Court Judge that have devalued the lives and liberty of people with disabilities. Judge Kavanaugh’s rulings and statements on health care, self-determination, employment, and education threaten the rights of all Americans with disabilities." View the Bazelon Center for Mental Health Law's 10 Reasons People with Disabilities Should Oppose Judge Kavanaugh’s Nomination.


New Sign Advocacy Alert! July 2018 - Voter Checklist

Are you registered to vote, educated about this year’s election, and prepared to cast a ballot in primaries in August and voting in November 2018? 

Use our NHU Voter Checklist to get ready to vote!

New Sign Advocacy Alert! July 2018 -Will Your Voice Count in the 2018 Election? - Are YOU ready to vote?

Federal and local Midterm Elections are mere weeks away. Have you been paying attention? Do you know what is at stake? If you haven’t, and if you don’t, then it’s time to get to work… because your life may very well depend on it! If you haven’t, and if you don’t, then it’s time to get to work… because your life may very well depend on it!

If you have a disability, or you are a parent, family member, or caregiver of a person with a disability, chronic illness or a pre-existing condition, as it’s referred to these days, you do not have the luxury of sitting back silently as your legislators cut your benefits. This upcoming election is about your very existence!

For more information on disability issues, candidates, voter registration, state voter policies and more that will help YOU vote, go to Will Your Voice Count?

New Sign Advocacy Alert! National Disability Voter Registration Week July 16-20, 2018

See the AAPD Rev up campaign article and go to Vote.gov and select your state to register to vote in your state on-line.

New Sign Advocacy Alert! June 26, 2018 - Action Alert! Join the American Association of People with Disabilities on their call for National Call-In Day to Protect SNAP- Keep Food on the Table for Millions of Americans with Disabilities

See the AAPD article The Senate is expected to vote on the Agriculture Improvement Act of 2018 (S.3042) this week, most likely on Thursday, June 28. The Senate version of this bill, also known as the Farm Bill, protects the Supplemental Nutrition Assistance Program (SNAP) benefit levels and eligibility. SNAP helps millions of people with disabilities afford a nutritionally adequate diet. Call 1-888-398-8702 and enter your zip code to be connected directly to your Senators (toll-free number courtesy of Feeding America). Urge your Senators to vote YES on the Agriculture Improvement Act of 2018 (S.3042) and to oppose any amendments that would weaken SNAP. For more advocacy tools and to learn more about this legislation, visit the link above.

May 2018 - Prevention of Disability starts with good prenatal care for pregnant Women

And how does the US rank against other countries for prenatal care. "The US is the only major industrialized country that does not guarantee prenatal care to pregnant women." Visit the article by the Children's Defense Fund, http://www.childrensdefense.org/library/misc/america-ranks-among-industrialized countries.html(link no longer available) How America Ranks Among Industrialized Countries

May 16, 2018 - The Washington Post has published an article that the U.S. spends less on chidren than almost any other developed nation

May 16, 2018 - From 1987 to the present - How do we change the fact that the US track record for infant mortality and infant disability remains higher than most industrialized nations?

In an artical in Health magazine in 1987 an article concluded that for the thousands of babies who do not make it through their first year would be preventable. It was not confined to low socioeconomic groups but to lack of health care in all groups. More money was spent on research and use of expensive intensive care in neonatal units to save babies after birth and the article focused that the US must concentrate efforts on producing fewer weak babies. "We have invested too much money in that {high-tech}area and not enough in preventing babies from being born at low birthweight." Studies show that good prenatal care works to reduce low birth weight babies. The US of all industrialized nations stands alone in its failure to assure pregnant women access to prenatal care and delivery services."

Advocacy Alert! February 2018 - American Association of People with Disabilities (AAPD) Action Alert -Tell YOUR Congressmen to stop the bad behavior of lawyers, not take away YOUR civil rights and access protected by the ADA- Vote No on HR 620

Review the AAPD notice, schedule to contact your Congressman before the vote Thursday, Feb. 15th and let them know that you should not have to wait months to gain access to a restaurant, hotel, store, or other public place of business. Stop the lawyers who take advantage of the law, don't take away civil rights and access protected by the ADA for 50 millon Americans with disabilities. Vote No for HR 620. To learn more visit: Don't Let Congress Chip Away at the ADA
From the CCD---"H.R. 620 would create significant obstacles for people with disabilities to enforce their rights under Title III of the Americans with Disabilities Act (ADA) to access public accommodations, and would impede their ability to engage in daily activities and participate in the mainstream of society. Rather, the burden of protecting the right to access a public place is shifted to the person with the disability, who first has to be denied access; then must determine that violations of the law have occurred; then must provide the business with specific notice of which provisions of the law were violated and when; and finally, the aggrieved person with the disability must afford the business a lengthy period to correct the problem."

December 31, 2017 - Congress confirms, Johnny Collett for Assistant Secretary to lead Special Education of U.S. Department of Education

Johnny Collett, was confirmed by Congress as President Trump's pick for Assistant Secretary of education to lead the federal education department’s special education office. Collett, has served as director of special education outcomes at the Council of Chief State School Officers. In this role, he supported states in their work to raise expectations and improve outcomes for children and youth with disabilities. He previously served on the board of directors of the National Association of State Directors of Special Education, as the special education director of Kentucky Department of Education and as a high school special education teacher. Collette has worked in director positions at the local, state, and national levels. The National Center for Learning Disabilities supported Collett's confirmation. Disability Advocates are hopeful he will fulfill Special Education and Rehabilitative Services obligations to students and families in the public schools in light of the federal removal of education guidance documents for educating students with disabilities by the present Secretary of Education, Betsy DeVos.

Advocacy Alert! December 12, 2017 - Call your Senators about the tax cut bill - Get the facts and how it will affect people with disabilities, how they plan to cut Medicaid, Medicare.

U.S. Senators need to hear directly from constituents about how the proposed tax bills will affect people with disabilities and their families.

How the tax bill will impact people with disabilities

Future plans to cut Medicaid now public record


New Sign Advocacy Alert! Wednesday, Nov. 29th, 2017 - National call-in day on the Senate tax cut bill has been organized for people with disabilities, families, and advocates around the country

U.S. Senators need to hear directly from constituents about how the proposed tax bills will affect people with disabilities and their families.

The Senate could vote on this bill as early as this Thursday (11/30) or Friday (12/1).

You can RSVP and invite friends using the Facebook event. (link no longer available)

Suggested Action Steps Call Your Senators!!!

Share your concerns about how the current tax proposals could cut Medicaid and other programs you care about and use. Share your concerns about how repealing the requirement for all people to purchase health insurance may cause premiums to rise, more people to become uninsured, and result in fewer choices of insurers in some areas. If you or your family member has a rare disease, tell your Senators and Representative how this credit has or could impact quality of life for people with rare diseases.

National Advocates say the bill will hurt people with disabilities because: The bill increases the federal deficit by $1.5 trillion. This means that the federal government is not collecting enough money to pay for existing programs and services like Medicaid and many other long term care programs).

National advocates are very concerned that tax cuts, which reduce the amount of money the government has to spend, will result in cutting Medicaid, Medicare, Social Security and other programs and services that help people with disabilities. It eliminates tax deductions and credits—including the Rare Disease Tax Credit—that help people with disabilities work, access housing, and get medication. It gets rid of Affordable Care Act’s requirement that everyone have health insurance. This will cause premiums for people with disabilities and pre-existing conditions to increase, leaving health insurance unaffordable for millions.

>We cannot list all the concerns for people with disabilities that the bill will cut.

For more information on additional disability concerns, visit Ask Congress to stop trading Tax Cuts for Medicaid from the AAPD or visit the Center for Public Representation article: National Call In Day: No Tax on Disability!

New Sign Advocacy Alert! November 15, 2017 - AAPD - Action Alert! - Ask Congress to stop trading Tax Cuts for Medicaid and other essential services! Contact your Senator!

House of Representatives is expected to vote on the Tax Cuts and Jobs Act (H.R. 1) this Thursday (11/16/2017). The Senate has begun markup on their version of the bill, also titled the Tax Cuts and Jobs Act, this week and is expected to hold a floor vote the week after Thanksgiving.

These acts plan to eliminate the following deductions that offer assistance to people with disabilities.

  • Medical Expense Deduction: people with high healthcare costs, which largely includes people with disabilities, chronic health conditions, and other medical conditions are allowed to deduct out of pocket expenses which otherwise might leave them devestated.
  • Disabled Access Credit and Barrier Removal Tax Deduction: Businesses that accommodate people with disabilities may qualify for tax credits and deductions which incentivizes small businesses to make their businesses accessible for people.
  • Work Opportunity Tax Credit: Offers businesses a tax credit for hiring people with disabilities, veterans and other groups.
Read more about what is in the tax bill that may affect you -

House Tax Bill Bad for Those Who are Aging and Disabled – Senator Bob Casey (D-PA)

Both bills would add $1.5 trillion to the federal deficit and are skewed to benefit the most wealthy Americans. If passed, this legislation presents a dangerous scenario that could lead to future funding cuts to Medicaid, Medicare, Social Security, and other supports and services that people with disabilities rely on to live independently in the community.

Once again we have to alert you that your Medicaid is in jeopardy! Please raise your voice to once again help to stop Affordable Health Care repeal of individual mandates included in this bill!

Learn about the bill by clicking on this article from the American Association of People with Disabilities (AAPD) which also has everything and every idea on how to contact your senators.
- Action Alert! Don't Let Congress Trade Tax Cuts for Medicaid and other Essential

Share this newsletter with your family and friends.

Call your Senator every day, and tell your Senator how you are concerned

New Sign

Advocacy Alert! October 24, 2017 - CHIP has not been renewed by Congress, placing many million of children with special needs at risk of losing health insurance and therefore their health care

The Children’s Health Insurance Program (CHIP) is a vital part of our nation’s health care system, specifically designed to provide coverage for children of families with low-to-modest incomes. CHIP has been recognized as vital to the future of our nation because it covers children. CHIP has always been a nonpartisan program because of the recognition of its importance in stabilizing children and families. CHIP funding must be periodically extended by Congress. Current funding expires at the end of September 2017. Without extending CHIP funding, coverage for the nearly 9 million children who rely on CHIP is in jeopardy. Read the article at FamiliesUSA . Contact your representative to renew CHIP.

New Sign

Advocacy Alert! October 5, 2017 - Letter from the National Disability Leadership Alliance (NDLA) to House leadership expressing opposition to H.R. 620 the ADA Education and Reform Act of 2017.

The NDLA is a national cross disability coalition that includes fifteen (15) national organizations that are led by people with disabilities and represents thousands of constituents. The NDLA is also supported by allies that work in collaboration to build a strong and unified cross-disability movement across the United States so that individuals with disabilities have the power to influence national policies that have a negative impact on our community. H.R. 620 severely undermines the landmark civil rights law, the Americans with Disabilities Act (ADA) because it will ultimately harm individuals with disabilities and at a time where there are already effective mandates, programs and initiatives that are established through the Department of Justice Civil Rights Division. This bill works to protect businesses instead of ensuring the rights of people with disabilities are protected. See this article at Disability Organizations Opposition letter to H.R. 620 Please write your Representative asking to uphold the rights of people with disabilities access to businesses. This access leads to consumerism and employment both necessary for businesses and people in our society.

Advocacy Alert! September 20, 2017 - AAPD - Action Alert! 10 Days to Stop Latest Health Care Repeal Effort - Contact your Senator!

Once again we have to alert you that your Medicaid is in jeopardy as well as health care for preexisting conditions. Please raise your voice to once again help to stop health care repeal. The Graham-Cassidy-Heller-Johnson (GCHJ) bill – is another effort to repeal the Affordable Care Act (ACA) and gut Medicaid – and it is gaining traction in the Senate. Last week Senator Cassidy (R-LA), one of the co-sponsors, told reporters he believes he has support from 48-49 Republican Senators, just two or three votes shy of the majority needed to pass this bill. Learn about the bill in this article from the American Association of People with Disabilities (AAPD) which also has everything and every idea on how to contact your senator - Action Alert! 10 Days to Stop Latest Health Care Repeal Effort.

Accessible Cabin at campsite

New Sign July, 2017 -Celebrate the 27th Anniversary of the Americans with Disabilities Act (ADA)

How has the ADA helped you!

We must not be complacent, we must continue to be actively educating, training and building accessible awareness in our communities!

Share your ADA experience with us at NHU!

At New Horizons Un-Limited we celebrate the ADA by honoring the activism and effort of the committee and volunteers
Who Designed and Built the First Accessible Camping Cabins in the Wisconsin State Parks! 1990-1991!

Wisconsin was given a great gift in 1991, Mirror Lake Accessible Camping Cabin for people with disabilities and their famlies to be able to enjoy the Wisconsin State Park.

We must appreciate today the amount of time and commitment that the members of the committee, the efforts of Anthonette Gilpatrick, Accessiblity Coordinator for the Wisconsin DNR, the Wisconsin DNR, Paul Quick II, architect and Art Miller, engineer and the Telephone Pioneers. This was just before the ADA was brought to law, yet the accessible ideas and decisions they made are the basis for the design and the accessible priorities and implementation of the seven additional cabins that have been built since 1991 in the Wisconsin State Parks.

Advocacy Alert! July 17-21, 2017 - AAPD - REV UP: Register, Educate, Vote, Use your Power

The American Association of People with Disabilities' REV UP Campaign aims to increase the political power of the disability community while also engaging candidates and the media on disability issues. REV UP stands for Register! Educate! Vote! Use your Power! Full political participation for Americans with disabilities is a top priority. AAPD works with state and national coalitions on effective, non-partisan campaigns to eliminate barriers to voting, promote accessibility of voting technology and polling places; educate voters about issues and candidates; promote turnout of voters with disabilities across the country; engage candidates and the media on disability issues, and protect eligible voters’ right to participate in elections. Use this Registration guide to register to vote this week! Be prepared to have your voice be heard!

New Sign Advocacy Alert! June 26, 2017 - If You are concerned about Your Medicaid make Your Voice Heard!! The Wisconsin Board for People with Developmental Disabilites (WI-BPDD) offers the following article and urges you to Call your Senator and tell your story today!

The U.S. Senate is set to take a vote on The Better Care Reconciliation Act that would contain a 26% cut to Medicaid over the next decade. Cuts to Medicaid mean cuts to 20 Wisconsin programs like Family Care, IRIS, the Children’s waiver, mental health programs, autism services, personal care, and important therapies like speech, OT and PT. If you use these services call your Senator

Call your Senator and tell how you are concerned also because: "Cuts to Medicaid will hurt your state's economy and lead to job loss. Medicaid brings about several billion dollars to each state which supports hospitals, providers, and jobs through 20 Medicaid-funded programs. For example there are 75,000 Medicaid providers in Wisconsin – many of them small businesses and in rural communities. Cuts to Medicaid will result in cuts to provider rates and make provider shortages worse!" Tell your Senator how Wisconsin legislature voted against such cuts to our Wisconsin small business health care infrastructure this past year and your state cannot afford to be devastated at the federal level.

Your voice is important! Democracy means each of us must take responsibility. No one has the time, but freedom and democracy means we are a part of the whole.

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!

WATCH BPDD Board Member Delores Demonstrate How To Make A Call Over at the BPDD Facebook Page: How to Make a Call Video at the BPDD Facebook Page (no longer available)

If you would like more information about this fact, you can use these resources:

Commonwealth Fund: The American Health Care Act: Economic and Employment Consequences for States

U.S. News & World Report Senate Health Care Bill Puts Affordable Insurance Out of Reach

New Sign Advocacy Alert! June 1, 2017 - National Disability Institute's Report on President Trumps Proposed Budget

The National Disability Institute has released a report on President Trump Releases Proposed Budget. The NDI summarizes the massive cuts to Federal departments, agencies and programs which will affect people with disabilities. Cuts to Medicaid, Social Security Supplemental Security Income, Councils on Developmental Disabilities, independent living services and traumatic brain injury services, National Institutes of Health (NIH) funds that include research on the causes of and successful interventions to address disabilities. Centers for Disease Control and Prevention (CDC) efforts in surveillance and prevention of developmental disabilities, Housing and Urban Development Section 811 program, interventions and medical training for health professionals, for individuals with autism and other developmental disabilities, authorized by the Autism CARES Act and administered by the Health Resources and Services Administration, and the elimination of the Paralysis Resource Center. Although the NDI wants everyone to realize this is the starting point for Congress, we must all work to educate the public and Congress on the devistating impact this budget would have on people with disabilities. Please write or call your U.S. Representatives and Senators.

New Sign Advocacy Alert! May 2017 - Congress Voted to Defund Essential Care for People with Disabilities!

Speaker Ryan took the American Health Care Act which repeals the Affordable Care Act and defunds Medicaid and passed it in the U.S. House. Disability advocacy groups spent a lot of time trying to educate our representatives what the Affordable Care Act and Medicaid means in the lives of individuals with disabilities. Yet these issues included in the repeal were glossed over and are never addressed in their explanation of the new Act or in very few news articles related to the ACA. The issues that will affect people with disabilities are being ignored. 65% of the people on Medicaid are people with disabilities. The proposed American Health Care Act will have potentially catestrophic effects on the health of people with disabilities, their ability to work and their providers. The individual states cannot pick up the financial burden, nor can people with disabilities or their families, or health care providers/hospitals. People with disabilities will lose their care, providers will lose their jobs, families will be unable to care for their loved ones.. Continue to tell your story or if you didn't get a chance to educate your Senators and your representatives again on how Medicaid assists you, please take the time now. It is important to keep reminding them to make sure the Senators can change this legislation. As pressure mounts to fund new agendas such as tax reform and the military, they will continue to work to defund Medicaid.

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 -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 .

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!

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.

https://www.whitehouse.gov/Farewell?utm_source=email&utm_medium=email&utm_content=email666-text2&utm_campaign=farewell (link no longer available)

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 https://www.whitehouse.gov/farewell/info (link no longer available)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 (https://www.whitehouse.gov/issues/disabilities)(link no longer available)WhiteHouse: Issues: Disabilities

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 (https://www.whitehouse.gov/issues/disabilities) (link no longer available) 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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