the advocacy monitor

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

Independent Living & The Rehabilitation Act

Fight Cuts to Independent Living: Talking Points to Take Action

Appropriations subcommittees have been holding hearings over the past couple of weeks to begin finalizing their fiscal year 2018 (FY18) spending bills. Appropriations are high on the Congressional agenda, and we cannot let these decisions move forward without Congress hearing from the Independent Living community. Any funding cuts to the IL Program would be detrimental to CILs across the country.

The appropriations subcommittees have not released spending bills yet, but we have seen proposals from the Administration. The President’s May budget outline proposed major cuts to disability-related programs, including the elimination of the Part B funding to create a new “Partnership for Innovation, Inclusion, and Independence”. We have heard that this Partnership will not be considered by Congress; however NCIL still strongly opposes the proposal. On June 9, NCIL sent a letter of opposition to the House and Senate Appropriations Committees along with the Brain Injury Association of America (BIAA), the National Association of State Head Injury Administrators (NASHIA), and the National Association of Councils on Developmental Disabilities (NACDD), who represent the other organizations that would be hit with funding cuts by the creation of this Partnership.

While we know the final spending bill passed by Congress will be very different than the President’s proposal, we also know that Congress hopes to drastically decrease spending. Decreasing spending means there will be cuts, and some of those cuts will likely be to the programs and departments people with disabilities rely on.

As always, we need to fight against any cuts to the IL Program. But even if Congress proposes level funding again for FY18, it’s simply not enough. In order to meet the increasing demands on the IL Program, including carrying out the fifth core service and overcoming years of devastating cuts, the reality is that we need a significant funding increase. That’s why for several years now we have been asking Congress for a $200 million increase for the Independent Living line item. This number was arrived at after careful and thoughtful analysis of the needs of the IL community. Please see our FY2017 talking points for more information.

There’s a lot going on right now, and attacks on the disability community seem to be coming from all directions. But IL funding must remain a priority! Without adequate funding, CILs around the country will be unable to support people with disabilities to live independently in our homes and communities. We need to fight to protect IL funding and make sure Congress hears from the people who will be harmed by cuts. Please contact your members of Congress and tell them why the IL Program is so vital to you. If you work at a CIL, invite your Members of Congress to visit. Members of Congress need to hear directly from their constituents with disabilities to understand the importance of the services and supports CILs provide in their communities every day. Only by hearing from their constituents will Congress begin to understand the importance and the true value of the IL Program!

Sample Talking Points

Funding Increase:

  • The Independent Living Program critically needs an increase in funding. A $200 million increase would help to restore cuts, make up for inflation, meet the greatly increasing demand for services, and effectively carry out the recently added fifth core service (transition).
  • Disability rights and Independent Living have long been bipartisan issues. The Independent Living Program is an effective and efficient program that saves states and the federal government money.
  • Centers for Independent Living provide services to millions of individuals with disabilities each year including (but not limited to): peer support; IL skills training; information and referral; individual and systems advocacy; transition and diversion; assistance in securing accessible, affordable, and integrated housing; personal assistance; transportation; vocational and employment services; assistive technology; and youth services.
  • CILs save taxpayer dollars by helping people with disabilities remain or return to their homes and receive services and supports in their homes and communities.
    • From 2012-2014, CILs moved 13,030 people out of nursing homes and institutions, saving states and the federal government over $500 million.
    • A 2011 study by NCIL and the Rehabilitation Services Administration found that CILs were able to keep 85% of at-risk consumers out of institutions and move 30% of institutionalized consumers back into the community.

“Partnership for Innovation, Inclusion, and Independence” proposal:

  • The proposal results in a $57 million reduction for people with disabilities.
  • The proposal reflects a lack of understanding of the three line items involved, each which have distinct statutory requirement in different statutes.
  • Eliminating Part B funding to create this partnership would result in CILs closing and people with disabilities around the country losing their jobs.

Information Alert: NCIL and Partners Tell Appropriations Committees We Oppose Trump Budget!

Logos - Brain Injury Association of America - National Association of State Head Injury Administrators - National Association of Councils on Developmental Disabilities - National Council on Independent Living

On June 9, 2017, the National Council on Independent Living (NCIL), the Brain Injury Association of America (BIAA), the National Association of State Head Injury Administrators (NASHIA), and the National Association of Councils on Developmental Disabilities (NACDD) sent the following letter to the House and Senate Appropriations Committees opposing President Trump’s Budget Blueprint.

June 9, 2017

Dear Chairman Blunt, Ranking Member Murray, Chairman Cole and Ranking Member DeLauro:

On behalf of the Brain Injury Association of America (BIAA), the National Association of State Head Injury Administrators (NASHIA), the National Association of Councils on Developmental Disabilities (NACDD), and the National Council on Independent Living (NCIL), we write to oppose the President’s Fiscal Year 2018 proposal to consolidate and significantly reduce funding for three critical programs in the U.S. states and territories. This proposal includes a $57 million reduction in funds for persons with disabilities by creating a new program called Partnerships for Innovation, Inclusion, and Independence within the Administration for Community Living in the U.S. Department of Health and Human Services. Proposed funding for this new program is $45 million, which is a significant reduction in funds currently appropriated for our separate programs.

Our programs work across the states and territories in an effort to provide community-based supports and services to those with different types of disabilities. However, each of the programs has a unique and distinctly different mission, which would impede the purpose of creating this new program. Attempting to combine programs that support people with intellectual and developmental disabilities with programs that support people who have substantiated a traumatic brain injury and the cross-disability population will result in a diluted and misguided attempt to put all people under one group and people with disabilities will not be adequately accounted for and served within the states.

Congress has long recognized that there is great diversity within the disability community. Over the years, programs were authorized to address the diverse and unique needs of each population. In 1970, the Councils on Developmental Disabilities, and in 1975, the Protection and Advocacy (P&A) agencies were added to the University Centers for Excellence in Developmental Disabilities (UCEDD) to the Act now known as the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) to advocate for and serve the population of people with intellectual and developmental disabilities. In 1978, Congress authorized the Independent Living Program and authorized federal funding for Centers for Independent Living (CILs) to serve people with all disabilities of all ages. The program was reauthorized in 2014. In addition, the Traumatic Brain Injury Act of 1996, reauthorized in 2014, created and funded the State Grant program for Traumatic Brain Injury (TBI) located 19 states to develop and expand rehabilitative and community-based services specific to the needs of individuals with TBI.

We firmly believe that the DD Councils are already in their best home along with their two other DD Act partners, the P&As and UCEDDs. DD Councils are currently perfectly positioned to provide critical supports and authentic voices that aid Governors and state legislatures in making their state fully inclusive of people with intellectual and developmental disabilities. Similarly, the Statewide Independent Living Councils (SILCs) are also well positioned in each state to serve a cross-disability population in line with the independent living philosophy and emphasizing consumer control. Further, the Independent Living Part B funding in question funds far more than the SILCs, contributing to states’ CIL funding, service provision, outreach, and training and technical assistance. Likewise, the State grant programs for those with TBI are active and achieving much success in the 19 states where they exist with their current structure.

We fully recognize that there are times when consolidation of programs makes great sense. The DD Act is one of those consolidation examples of a perfect pairing of organizations and missions that serve one distinct population. In some states, there are times that the SILC, DD Council, and TBI grant program will come together around a common goal. However, these three programs are not designed to function in a consolidated manner and continue to meet the diverse needs of the people they were established to support.

People with all types of disabilities deserve the best we can offer in order to help them live the best life possible – with independence, control over their own lives, and dignity. To that end, we strongly urge you to continue to fund our separate programs and not support the creation of the Partnerships for Innovation, Inclusion and Independence as proposed in the President’s FY ’18 budget.


Donna Meltzer
Chief Executive Officer, NACDD

Susan Vaughn
Director of Public Policy, NASHIA

Kelly Buckland
Executive Director, NCIL

Susan Connors
President/CEO, BIAA

Bob Williams Confirmed as NCIL Conference Speaker

Join us at the 2017 NCIL Closing Plenary as Bob Williams, Deputy Commissioner of the Administration on Disabilities and Director of the Independent Living Administration (ILA), addresses the NCIL membership. Bob will provide an overview from the ILA to attendees, and he will also be taking time to answer some of the questions we have for him.

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.Bob joined the Administration for Community Living (ACL) in these dual roles in January of 2016. A person with a disability and longtime disability advocate, Bob has lived and worked in DC for over three decades. Prior to joining ACL he held several roles at the Social Security Administration (SSA), the Administration on Developmental Disabilities, and the Department of Health and Human Services (HHS). Outside of the federal government, he has worked for the United Cerebral Palsy Association, the Arc, the Youth Policy Institute, the DC Center for Independent Living, and was active with the Consortium for Citizens with Disabilities.

ACL has undergone several changes in recent years, and the transition of the Independent Living program is still underway. The Closing Plenary will be an opportunity to hear directly from the head of the ILA, as well as to ask the questions that have come up during the IL transition. The NCIL Annual Conference Committee respectfully requests that you send your questions in ahead of time. If you would like to submit a question, please send it to NCIL Policy Analyst Lindsay Baran at by Monday, June 28, 2017.

SILC-NET Presents… A National Teleconference & Webinar: Virtual Town Hall to Gather Input on the New SPIL Instrument and Instructions

SILC-NET Presents… A National Teleconference & Webinar:

June 15, 2017; 3:00 – 4:30 p.m. Eastern

The Administration for Community Living will soon revise the State Plan for Independent Living instrument and instructions.  Join us on June 15th to provide your input on these revisions!

IL-NET Logo - CIL-NET + SILC-NETThis virtual town hall meeting is conducted to allow those involved in and affected by State Plans for Independent Living to provide guidance and recommendations to the Administration for Community Living and the SPIL Revision Work Group formed by ILRU at the request of ACL to develop a revised SPIL instrument and instructions. The purpose of this work is to improve the usefulness and effectiveness of all state plans and to conform with new federal guidelines issued pursuant to the most recent amendments to the Rehabilitation Act encompassed in the Workforce Innovation and Opportunity Act (WIOA). ILRU asked Ann McDaniel, director of the West Virginia Statewide Independent Living Council and a recognized SILC national leader, to take a leadership role in a work group on the SPIL. McDaniel and ILRU’s Richard Petty co-chair the group. The ILRU team and McDaniel considered it crucial that the group be fully representative of all entities involved in developing state plans. The work group, thirteen members in total, includes representatives of SILCs (a large majority of members), designated state entities, and ACL, and is in the process of adding CIL representatives. The work group has met twice each month since March 2017. The work group will consider and incorporate the input from the virtual town hall into the proposed SPIL revisions, which will be submitted to ACL during the summer of this year.

Registration Fee: This event is free of charge.

Target Audience: SILCs, CILs, and DSEs.  [Read more…]

President Trump’s Budget Released: Major Cuts To Programs and Services for People With Disabilities

The President released his budget proposal today, and while the $4.1 trillion request is slightly higher than FY 2017 spending levels, it significantly reallocates where the money would go. The budget proposal, entitled “A New Foundation for Greatness,” would put more money into spending on defense, border security, and infrastructure. It would slash nondefense discretionary funding, already historically low, by $54 billion next year and an additional 2% per year through 2028, for an estimated $3.6 trillion in cuts to spending over 10 years.

NCIL logo - National Council on Independent LivingKelly Buckland, Executive Director of the National Council on Independent Living (NCIL) said of the President’s budget: “The President’s budget proposal is irresponsible and would be detrimental to many of the programs and services people with disabilities rely on. The programs that support our health, well-being, and independence have been targeted, with proposed funding for these programs being brought to unrealistic and dangerously low levels. If enacted, hundreds of Centers for Independent Living may be forced to close, and people around the country will die from the cuts to Medicaid. The results of this budget would be disastrous.”

Despite the fact that the President previously promised not to cut Social Security, the proposed budget would make $72 billion in cuts to disability programs like Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Part of those cuts would result from the Administration’s efforts to limit eligibility and ‘encourage’ work. While eliminating disincentives to work is a priority for NCIL, we believe the Administration’s efforts are misguided, operating under the assumption that these programs are rampant with people ‘gaming the system’. In reality, these programs, particularly SSDI, have strict requirements that must be met and rigorous screenings already in place. The proposed budget cuts will largely serve to put vital benefits out of reach for even more people with disabilities.

Moreover, the budget proposal includes huge cuts to Medicaid funding, both from the repeal and replace of the Affordable Care Act (ACA) and additional cuts to the program. The budget proposes well over $1 trillion in Medicaid cuts (estimates have been as high as over $1.4 trillion) over the decade from a combination of repealing and replacing the ACA and an estimated $610 billion in additional cuts. President Trump’s budget also proposes allowing states to choose between per capita caps or block grants for their Medicaid program for all beneficiaries. The block grants in the President’s budget would make even further cuts than those allowed under the American Health Care Act (AHCA).

The Department of Health and Human Services budget appendix (PDF) also contains some major changes and cuts. As we saw in the leaked budget tables, the budget proposes a $142.4 million decrease in overall funding for the Administration for Community Living (for total funding of $1.85 billion). With regards to the Independent Living Program, the President’s proposal level funds Part C Independent Living funding at $78 million, but it completely changes Part B funding. The budget proposes ‘consolidating’ funding from Part B Independent Living funding ($23 million in the FY 2017 budget), the State Council on Developmental Disabilities ($73 million), and Traumatic Brain Injury funding ($6 million of the $9 million in FY 2017) into one “Partnership for Innovation, Inclusion, and Independence.” The funding for this new Partnership line item is $45 million, a $57 million loss from the $102 million combined in funding in FY 2017. The cuts resulting from this consolidation would be detrimental to all three programs. Moreover, these programs each have distinct statutory requirements in different statutes, which not only would make this consolidation injudicious, but also demonstrates a real lack of understanding on the part of the Administration.

On top of all this, the President’s budget proposal would also reduce spending on many other programs that people with disabilities and others rely on, like the Supplemental Nutrition Assistance Program (SNAP), the Children’s Health Insurance Program (CHIP), and Temporary Assistance for Needy Families (TANF). It would also make major funding cuts for housing, education, research, and much more.

Through this budget proposal, President Trump’s priorities come through clearly. The massive cuts to vital programs – including the Independent Living Program – on top of the cuts to Medicaid, SSDI, and SSI, display a complete ignorance about the needs of the people in this country; especially people with disabilities. That said, the President’s budget proposal is only one step in the federal budget process, and the President’s budget is never the final result. President Trump’s budget does not have the support of Democrats in Congress, and it has gotten mixed feedback from Republicans, with many expressing grave concerns. This proposal shows where our President’s priorities lie, but it is on Congress to develop the funding bills that will determine actual spending levels.

Take Action!

We need to fight now against any cuts that will negatively impact the Independent Living Program and people with disabilities in FY 2018. We need you to continue talking with your Senators and Representatives. Invite them to visit your Center for Independent Living (CIL) to see the invaluable work being done in their communities. Make sure they know how important the work of your CIL is to you, and let them know how harmful it would be to adopt the proposed ‘consolidation’ in the President’s budget. Also, make sure they know how important the programs our community relies on (like SSDI and Medicaid) are to the disability community. Congress needs to hear from their constituents now more than ever!

President’s Budget Expected to be Released on Tuesday

Now that Congress has funded the remainder of FY 2017, they are ready to get to work on FY 2018 funding (see our May 10 Action Alert). One key step in the federal budget process is the President’s budget request to Congress, which is expected to be released on Tuesday.

NCIL logo - National Council on Independent LivingUntil now, all we’ve seen from President Trump is the “skinny budget” (PDF) he released in March, which outlined some of his priorities. There have been rumors about his upcoming budget, and late last week Third Way (a centrist think tank) released a leaked spreadsheet containing President Trump’s proposed budget plan. Among other major cuts, the spreadsheet shows a decrease in funding for the Administration for Community Living (a $142.4 million decrease, for total funding of 1.85 billion). It does not address funding for the Independent Living Program specifically. Please note that we cannot guarantee the accuracy of this leaked document, and if accurate, there is a good chance that changes may be made before it is released on Tuesday.

We know that the President’s skinny budget and other rumored priorities have drawn criticism on both sides of the aisle. We also know that the funding levels the President sets forth will likely not be the final amounts when we see the Congressional appropriations bills. That being said, it has been made clear that Congress hopes to make major cuts, and the President’s proposed budget clues us in to where we may see the biggest decreases.

As a reminder, the Independent Living Program was level funded in the FY 2017 spending bill. Level funding does not meet our needs, but right now our focus must be on fighting against any cuts that will negatively impact the Independent Living Program in FY 2018.

We ask that you please continue talking with your members of Congress. Please continue trying to get them to visit your CIL to see for themselves the irreplaceable work CILs are doing in their own communities. Cuts to the IL program would be detrimental to CILs and people with disabilities all across the country, and it’s on us to make sure that our Senators and Representatives know how much IL matters to their constituents with disabilities. Now it’s more important than ever that we keep up the pressure!

RTC/IL Resilience Study Examines How People with Disabilities Live Successfully in Rural Areas

Source: University of Kansas Research and Training Center on Independent Living, or RTC/IL

Living in a small town can be challenging for anyone. For people with disabilities, rural areas can create even more serious barriers to accomplishing the things they want to do.

However, with the help of a trait known as resilience, many people with disabilities who live in rural areas have achieved a good quality of life and are able to participate in their communities.

“Some people do well in life because they face few obstacles to meeting their goals: they are healthy, they have parents who are well-educated and have the resources to provide their children with a good education, and they have the support they need,” said Jean Ann Summers, research director at the University of Kansas Research and Training Center on Independent Living, or RTC/IL.

The resilience study – which is still ongoing – didn’t focus on this group of people, though.

“Other people do well in life despite the obstacles that they face,” Summers said.  “They may have grown up poor, they may have a disability, they may live in a community where few jobs or other opportunities are available. And yet they thrive. They are able to achieve their goals and have a satisfying life in the community in spite of the odds that are against them. We say those people are ‘resilient.’”

Summers and her collaborators Dot Nary, assistant research professor at the RTC/IL, and Heather Lassmann, graduate research assistant, set out to identify what Summers calls “the secrets of success” that resilient people with disabilities employ to successfully live in rural communities. Their work is part of larger project based at the University of Montana Research and Training Center on the Ecology of Rural Disability.

“The study is important because if we can find out what people who are naturally resilient do, we can design a program to teach others how to be resilient,” Nary said. Read more at the RTC/IL website.

Get to the Core of It – Best Practices in the CIL Core Services: Information & Referral

CIL-NET Presents… A National Teleconference & Webinar:

June 21, 2017; 3:00 – 4:30 p.m. Eastern

Register online or by using the printable registration form (PDF)

CIL-NET is happy to announce an encore presentation of one of our most popular webinars. Get to the Core of It: Information & Referral is an essential training for CIL staff responsible for information and referral and consumer intake. Our presenters breathe life into a topic many of us take for granted. Our presenters will provide participants with a philosophical approach to I&R before delving into details about the staff skills and policies needed to run an exemplary I&R program. Our presenters have embraced the idea that I&R is more than just a numbers game – it’s the front door of their Centers and a way to get more people with disabilities involved in the Center and the Movement!

IL-NET Logo - CIL-NET + SILC-NETRegistration Fee: $75.00. Fee is per site (connection) and does not apply per participant; registrants are encouraged to gather as many individuals as desired to participate by telephone or webinar.

Target Audience: Executive directors, I&R specialists, and any staff of Centers for Independent Living who are involved in providing I&R services

Upon completion of this webinar, participants will have knowledge and resources that will enable them to:

  • Explain the critical role of I&R as the gateway to providing CIL consumers with information, knowledge, and resources in an efficient and responsive manner
  • Describe strategies to organize, track, and maintain comprehensive and extensive resource information on numerous disability-related topics
  • Describe best practice policies, procedures and staff training that result in highly effective interactions with consumers
  • Describe how to conduct follow up with consumers to determine the effectiveness of their CIL’s I&R service delivery

[Read more…]

Independent Living Level Funded in 2017 – Initiate Contact with Your Senators and Representatives Now to Avoid Future Cuts!

Last Friday President Trump signed the $1.1 trillion spending bill (PDF) that was passed by the House and Senate earlier in the week. The passage of this omnibus spending bill keeps the government funded through the remainder of FY 2017, which ends on September 30, 2017.

NCIL logo - National Council on Independent LivingGiven the recommendations from the Administration to make significant cuts, we were surprised to see that many of the programs and departments important to the disability community were level-funded, and some even received small increases. Our main funding focus, the Independent Living Program, received $101,183,000, which includes $22,878,000 in Part B funding and $78,305,000 in Part C funding. This is level funding from FY 2016 spending levels and is actually a very slight increase from the first part of FY 2017 due to the .19% across-the-board cut in the December Continuing Resolution (CR).

In addition to the Independent Living Program, there are several other funding levels to take note of. Several Departments received increases, including the Department of Health and Human Services (HHS): a $2.7 billion increase for a total of $77.7 billion, the Department of Transportation (DOT): a $681 million increase for a total of $19.3 billion, and the Department of Housing and Urban Development (HUD): a $513 million increase for a total of $38.8 billion. The Administration for Community Living (ACL) received a $1.2 million increase (for a total of $1.9 billion), with the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) being level funded at $104 million and the Assistive Technology Act also being level funding at $32 million; however, $2 million was allocated toward grants for Alternative Financing Programs for assistive technology devices. The Substance Abuse and Mental Health Administration (SAMHSA) received a $130.6 million increase (for a total of $3.6 billion). While HUD received an increase overall, Section 811 Housing for people with disabilities received a decrease of $4.4 million (for a total of $146.2 million); this was one of only a small number of HUD programs to receive a cut. And other Departments received decreases, including the Department of Labor (DOL): an $83 million decrease for a total of $12.1 billion and the Department of Education (ED): a $1.2 billion decrease for a total $68 billion. However, while funding for ED overall decreased, funding for the Individuals with Disabilities Education Act (IDEA) was increased by $90 million (for a total of $12 billion).

Now that the FY 2017 funding is finalized, Congress will begin to turn their attention to FY 2018. As a reminder, all we’ve seen from President Trump is the “skinny budget” (PDF) he released in March, which outlined some of his priorities. While there has been criticism on both sides of the aisle, we know that Congress hopes to make major cuts.

Level funding does not meet our needs, but right now our focus must be on fighting against any cuts that will negatively impact the Independent Living Program. Please continue talking with your members of Congress. Please continue trying to get them to visit your CIL over the recess. It is on us to make sure that our Senators and Representatives know how important Independent Living is to their constituents with disabilities. Only by hearing directly from their constituents will they understand the vital need for funding and the incredible value of the IL Program!

More Information:

Nominations Sought for Women’s Caucus Hall of Fame Award

The NCIL Women’s Caucus is pleased to announce nominations for the NCIL Women’s Caucus 2017 IL Hall of Fame Award.

Two hands clasp the Women's Caucus Award, which is multi-colored glass shaped like and abstract person. Women's caucus Co-Chair Mary Margaret Moore smiles in the background while presenting the award. We are seeking women who are leaders in our movement, who mentor other women in their community, and who work hard to push forward the rights of women with disabilities.

The Caucus is seeking nominations from now until May 31 at 5:00 p.m. Eastern. Winners will be announced at NCIL’s Annual Conference in July.

If you know someone who fits the bill, please fill out our nomination form.

In keeping with the theme of the Conference, “Revolution: A Global Independent Living Movement,” we are looking for nominations that include leaders who work to allow the new generation of IL women to lead. We know that the Independent Living Movement began with young leaders and that many young people today are making their mark in the Movement at a younger age. We are looking for nominations about these young women.

We are also hoping to receive nominations that encompass the full NCIL membership. We hope to have inductees into the hall of fame who have a diverse background when it comes to race, color, religion, sex, national origin, age, and disability.

On the first Friday of every month, a group of women who are members of NCIL speak together about important policy issues facing women who have disabilities. We talk about leadership opportunities, mentoring, and most importantly, advocacy strategies. We invite you to join these calls and become part of this work! For more information, contact Sarah Launderville at or Mary Margaret Moore at