the advocacy monitor

Independent Living News & Policy from the National Council on Independent Living

NCIL Applauds the U.S. Supreme Court’s Decision Strengthening Standards for Students with Disabilities

Last week, the U.S. Supreme Court unanimously decided in favor of a student with a disability in Endrew F. v. Douglas County School District. Last week’s decision sets a more rigorous standard for special education services, stating that the Individuals with Disabilities Education Act (IDEA) demands educational programs to be “reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.”

NCIL logo - National Council on Independent LivingIDEA requires that disabled students be provided a free and appropriate public education (FAPE). Reinforced by the 1982 U.S. Supreme Court Rowley decision, the requirement for students with disabilities has been that schools provide for educational benefit “merely more than de minimis,” or just above insignificant. This low threshold for FAPE has resulted in weak standards for students with disabilities for decades, including Individualized Education Program (IEP) accommodation denials.

This decision sets a standard that is “more demanding than ‘merely more than de minimis,'” stating that while each student’s goals may differ, “every child should have the chance to meet challenging objectives.” Maureen Hollowell, NCIL’s Education Subcommittee Chair, said, “for years students with disabilities have been held back from making academic progress because of a very low standard established by schools and the courts. Today the U.S. Supreme Court gave a new generation of children opportunities, IF we empower students and families to use this new standard.”

Information Alert: American Health Care Act Defeated – Thank You and Congratulations!

The afternoon of Friday, March 24, less than an hour before a vote on the American Health Care Act (AHCA) was supposed to take place, the bill was pulled! This is a huge blow to the GOP’s efforts to repeal the Affordable Care Act (ACA) and make drastic cuts to Medicaid. In fact, after the decision was made, Speaker Paul Ryan and President Trump both said that the ACA will remain in place for the foreseeable future.

This is a huge win! While there were many reasons for this outcome, one thing is certain: it would not have happened without your advocacy efforts. To those of you who called, emailed, Tweeted, attended town halls, met with your members, protested, held press conferences, got arrested, or wrote letters: thank you for your advocacy on this issue, and congratulations on a huge win!

We know that our community has a lot at risk right now, and we have other fights ahead of us. But for now, let’s celebrate the fact that we helped prevent major cuts to healthcare and Medicaid. The Independent Living community will keep fighting, and we’ve just proven that when we come together, we can accomplish great things!

Budget Cuts Looming – Contact Your Senators and Representatives About the Value of America’s Independent Living Program Today!

As many of you know, President Trump released his “skinny budget” (PDF) last week. This budget is a very simple and only partial overview that proposes billions of dollars in spending cuts to non-defense discretionary funding in order to pay for increases in military and homeland security spending.

The proposal includes cuts to many important departments and programs, including eliminating funding for the Community Development Block Grant program, eliminating the Low Income Home Energy Assistance Program (LIHEAP) program, and slashing the Department of Housing and Urban Development’s (HUD’s) funding by $6.2 billion. Read NCIL’s recent alert about Housing Cuts. The budget did not address funding for the Independent Living Program or for the Administration for Community Living (ACL).

The proposed cuts in the budget are drastic and would be incredibly destructive to many of the programs that people with disabilities rely on. That said, the President’s budget request is only the first step in the federal budget process. It’s the U.S. Congress that will determine the country’s spending levels, and there has already been criticism of President Trump’s budget on both sides of the aisle.

Right now, our focus needs to be on the House and Senate Appropriations Committees and the relevant subcommittees. The government is currently being funding by a Continuing Resolution (CR), which provides funding through April 28, 2017. Before they begin to work on FY 2018 funding, Congress will need to fund the remainder of FY 2017 to avoid a shutdown. We will be following this and FY 2018 funding as these processes unfold, and as always, we will keep you updated.

There is more at stake than ever right now, and we will need to work together to ensure that none of President Trump’s proposed cuts are implemented, and that the Independent Living Program does not see any future cuts. Please help us make sure that Congress knows how important IL is to their constituents around the country by inviting your Senators and Representatives to visit your local Center for Independent Living. It’s our hope that seeing the work the Independent Living community is doing every day will help our members of Congress understand the vital need for additional funding and the incredible value of the IL Program!

House Vote on American Health Care Act Happening Today! Take Action!

The House is voting today on the American Health Care Act (AHCA), which repeals key pieces of the Affordable Care Act (ACA) and makes major cuts to Medicaid. Their goal is to pass the bill by 5:00 p.m. today! Watch the livestream.

Take Action!

Last minute changes were made to the bill to get more Republicans on board, one of which was an amendment to repeal the ten Essential Health Benefits. This is on top of earlier changes to allow a block grant option for Medicaid and Medicaid work requirements. Our best strategy right now is to reach out to the moderate Republicans in the House and tell them to vote NO on this terrible bill! Please see the list below of members who absolutely must hear from their constituents NOW. If your member is not on the list, call them anyway!


Earlier this week, House Republicans released an updated version of the American Health Care Act in the form of a manager’s amendment. This amendment allows states to choose a Medicaid block grant for their “traditional populations,” sunset Medicaid expansion this year, impose Medicaid work requirements on non-disabled beneficiaries, and it moved up the date of the Affordable Care Act (ACA) tax repeals.

These changes were intended to address some of the bill’s criticisms, but they didn’t do anything to increase access or affordability of coverage, and they also didn’t appease many House Republicans who still opposed the bill. Last night, additional amendments were introduced as a last-ditch effort to get more members on board, including an amendment to repeal the ten Essential Health Benefits.

These changes do nothing to remedy the harm the AHCA will cause, and in fact they actually further the risks to the disability community. Keep contacting your members of Congress. Your efforts are needed more than ever!  [Read more…]

Call for Volunteers: 2017 Annual Conference on Independent Living

Revolution - A Global Independent Living Movement - Annual Conference on Independent Living 2017. Graphic: Continents have been added to NCIL's logo (a blue semi-circle), which forms a globe. A red heart sits between the end points of the semi-circle.The 2017 Annual Conference on Independent Living is scheduled for this July and we have an exciting Conference planned! The Annual Conference Committee and NCIL staff is quite dedicated all year planning the Conference on a limited budget and we are very committed to keeping costs low to make the Conference as affordable as possible for attendees. To make this Conference affordable for all, we need volunteers!

We hope that IL advocates, family, friends, and supporters around the country will provide significant assistance at the 2017 Annual Conference on Independent Living. We have wonderful incentives for those who put in volunteer hours! We know some of your staff must attend all Conference activities, but if there are others that may not normally get to come to the Conference, incentives for volunteering may be the perfect opportunity for them. If you or your staff volunteers more than 5 hours during the Conference, half of the volunteer’s registration fee is waived / reimbursed. If you or your staff person volunteers 10 or more hours, the volunteer’s full registration fee will be waived / reimbursed.  [Read more…]

Spring 2017 NCIL Legislative & Advocacy Priorities Booklet Now Available!

The spring edition of NCIL’s Legislative & Advocacy Priorities is now available at the NCIL website.

NCIL logo - National Council on Independent LivingThis document contains specific information on the national legislative and policy priorities identified biannually by the NCIL membership, including funding for the Independent Living Program, healthcare and long-term care, housing, transportation, education, and more.

Please share this document with your Center or SILC staff, board, and the Senators and Representatives who serve your districts.

Contact NCIL for further information on the issues discussed in this document.

ADAPT Occupies U.S. Capitol Rotunda to Protest Medicaid Cuts and ACA Repeal

Source: ADAPT

ADAPT’s modified American flag (which features the universal symbol of accessibility in white stars) is held high during NCIL’s 2016 March to the Capitol. US Capitol Rotunda can be seen in the background.On Wednesday, March 22, 2017, ADAPT occupied the Rotunda of the U.S. Capitol Building while protesting Congress’ and the Trump Administration’s efforts to eliminate Medicaid and Affordable Care Act (ACA) protections that are critical for disabled people’s survival.

People with disabilities have been overlooked and rendered invisible as Congress and the Trump Administration rush to repeal the Affordable Care Act and block grant Medicaid, with potentially devastating consequences. Fifty ADAPT members with disabilities from across the country are in the Capitol Rotunda demanding to be heard by their elected representatives.

Solidarity press conferences are being held concurrently in at least 30 states, with many states holding press conferences in several locations around the state.

Legislation currently proposed in Congress does not address the following critical healthcare essentials for people with disabilities:

  1. Insurance plans will not have minimal requirements. We may end up with coverage that doesn’t cover anything.
  2. No true protection for the pre-existing conditions that all persons with disabilities have. Currently, proposed legislation indicates that we will have less coverage, pay higher premiums, and have no protection without continuous coverage.
  3. There is no mention in the American Healthcare Act (AHCA) of the Community First Choice Option that is contained in the ACA. This eliminates a critical pathway for us to bypass nursing facilities so we can live in our own homes.
  4. Medicaid block grants mean significant cuts over time in Medicaid funding to states. To compensate, the federal government proposes giving the states complete freedom to cut services and supports as they see fit. This risks throwing us back to a dark age where people with disabilities die without healthcare, are warehoused in horrific conditions, or are subject to abuse and neglect. The states have a harrowing history of providing NO supports and services when regulations and funding requirements are entirely removed.

In response, we demand:

  1. That there be no block granting of Medicaid, no per capita caps.
  2. That our Congressional Representatives and Senators co-sponsor the Disability Integration Act.
  3. That the Community First Choice Option be preserved.
  4. That critical protections of the ACA be preserved, including but not limited to true protection from discrimination for pre-existing conditions.

ADAPT logo: Free Our People“First this administration came for the Muslims, then they came for the immigrants, then they came for the free press, and now they are coming for us” said Lopeti Penima’ani, from Utah “but we will resist all attempts to take us back to the dark ages.”

Action Alert: Urge Congress to Oppose Housing Cuts!

Unless you’ve been living under a rock, you’ve probably heard about President Trump’s budget, which cuts the Department of Housing and Urban Development by 13%, or 6.2 billion dollars. This is just a rough draft; there are no line items available yet, which should also show more changes.

The budget blueprint announced the White House’s intention to eliminate the following programs:

  • Community Development Block Grants (CDBG)
  • HOME Partnership Program
  • Choice Neighborhoods (formerly HOPE VI)
  • NeighborWorks America
  • Self-Help Homeownership Opportunity Program
  • Section 4 Capacity Building for Community Development and Affordable Housing Program (which funds organizations like Local Initiatives Support Corp.)
  • U.S. Interagency Council on Homelessness

According to analysis by the Center on Budget and Policy Priorities, the other programs impacted are:

  • Housing Choice Vouchers (a loss of 200,000 vouchers projected)
  • Cuts to Section 202 (Supportive Housing for the Elderly) and Section 811 (Supportive Housing for Persons with Disabilities)
  • Cuts to public housing funding, meaning that more than $26 billion in repair needs probably won’t happen

Housing has had strong bipartisan support in the past, so it is unlikely that Congress will follow all of the proposed cuts or eliminations. Nonetheless, we still must pressure Congress to not accept ANY of them!

But the real danger is that there is another source of pressure for cuts to housing: The Budget Control Act of 2011. It was begun as an agreement to reduce the budget with automated spending caps applied equally to defense and to domestic programs. In 2018, under the Budget Control Act, $14 billion would be cut (Trump’s budget cuts another $54 billion) compared to 2017. However, some in Congress have been seeking to circumvent this agreement by having higher cuts in domestic programs to fund increased defense spending. This is where the real fight will be happening.

Take Action

Call your Representative and your Senators to ask them to oppose cuts to housing! Ask them to oppose all of President Trump’s proposed program eliminations, to increase funding for Section 8 Housing Choice Vouchers, and to eliminate the public housing backlog on capital needs.

Early Bird Discount on Conference Exhibits and Advertisements Expires April 4!

Revolution - A Global Independent Living Movement - Annual Conference on Independent Living 2017. Graphic: Continents have been added to NCIL's logo (a blue semi-circle), which forms a globe. A red heart sits between the end points of the semi-circle.Time is flying! There’s less than a month left to get your 10% early bird discount on conference exhibits and advertisements!

If you commit and pay for your NCIL conference exhibit or advertisement before April 4th, 2017, you get a 10% discount. And if you’re a NCIL member, you get an additional 10% off, bringing potential savings to 20%. But hurry! Exhibit spaces are going fast!

For pricing and other information, please visit If you have any questions, please contact Cara Liebowitz, NCIL’s Development Coordinator, at

Research Finds Individuals with Disabilities More Likely to be Employed in States with Expanded Medicaid

Individuals with disabilities are significantly more likely to be employed if they live in a state that has expanded Medicaid under the Affordable Care Act, a new study has found. The findings show expansion has allowed individuals with disabilities to increase their employment and not be required to live in total poverty to maintain their Medicaid coverage. Expansion not only enables people with disabilities to work more, which research has shown leads to greater quality of life, but contradicts the argument some have made that Medicaid expansion would “kill jobs” or be prohibitively expensive.

“Our finding has two major health and policy implications. First, in Medicaid expansion states, working-age adults with disabilities no longer will be required to be impoverished and apply for federal disability benefits to be eligible for public health insurance coverage,” the researchers wrote. “Second, to the extent that increased earnings and asset accumulation lead to improved health outcomes and decreased dependence on cash assistance, the shift from means-tested Medicaid coverage to expansion coverage could result in long-term cost savings to state and federal governments.”

Debate about the Affordable Care Act has been intense and discussions of repealing or replacing it have intensified since the election. This article sheds a great deal of light on the importance of the ACA and its impact on Medicaid expansion across the nation, both for states that have opted to expand Medicaid and those still considering this option.

“Medicaid expansion is empowering people with disabilities to go to work, and we would hate to see that rolled back because we could lose those gains.” – Jean Hall  [Read more…]