the advocacy monitor

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

Independent Living & The Rehabilitation Act

NCIL Releases Disability Pride Toolkit

NCIL is pleased to announce the release of our Disability Pride Toolkit, which was developed by outgoing Youth Transitions Fellow Kings Floyd in collaboration with NCIL’s Youth Caucus.

NCIL logo - National Council on Independent LivingThis toolkit is designed to help Youth Transitions Coordinators and Centers for Independent Living get started talking about disability pride within their local communities. While it is specifically targeted toward youth, the toolkit will be useful to advocates of any age.

The goal of the toolkit is to facilitate conversation about what it means to be proud of a disability identity as well as other intersectional identities. We encourage Centers for Independent Living and Statewide Independent Living Councils to start talking with youth in their communities about these topics, so that disability pride will be reflected in every aspect of the important work we accomplish together.

Please email, current Youth Transitions Fellow, with any questions.

Independent Living Appropriations Update

With the deadline for the end of the fiscal year fast approaching, Congress passed and the President signed a short-term Continuing Resolution (CR) to keep the government funded at current levels and suspend the debt ceiling through December 8, 2017. The legislation also provides $15.25 billion in emergency disaster relief funding.

This CR gives Congress additional time to work on their appropriations bills. That said, both the House and Senate have passed their Labor-HHS-Education (L-HHS-Ed) bills out of the Appropriations Committee. Both bills level fund the Independent Living program at $101,183,000, which includes $22,878,000 in Part B funding and $78,305,000 in Part C funding.

NCIL logo - National Council on Independent LivingWhile level funding is far from what we need, we are very happy that neither the House nor the Senate accepted the President’s proposal to make cuts to the Independent Living program’s Part B funding to create his proposed “Partnerships for Innovation, Inclusion, and Independence” (P3I). Both the House and the Senate included the exact same language in their reports, stating that they recognize the unique role played by each program (Statewide Independent Living Councils, State Councils on Developmental Disabilities, and State Advisory Boards on Traumatic Brain Injury) and that consolidation would not serve the needs of people with disabilities. Thank you to everyone who spoke out against this proposal. Our collective action on this helped to avoid what would have been disastrous cuts.

Now Congress has until December 8, 2017 to finalize each of their 12 annual appropriations bills. While Congress has made significant progress on many of the individual spending bills, there are differences between House and Senate bills that will have to be reconciled. Further, if Congress does not raise the cap on discretionary funding that’s required under the Budget Control Act of 2011, sequestration will go into effect, resulting in across-the-board cuts that will severely impact the programs and services people with disabilities rely on, including the Independent Living Program. Read more about the history of the Budget Control Act and sequestration in a 2012 NCIL Action Alert.

We will continue to keep you updated as more information is available. You can review both the House and Senate’s bills and reports below.

Cancelled: Building an Inclusive Statewide Independent Living Council

Cancellation Notice: Building an Inclusive Statewide Independent Living Council

We are sorry to announce that the upcoming teleconference and webinar, “Building an Inclusive Statewide Independent Living Council” has been cancelled. We hope to reschedule this event, but because we are unable to confirm a new date and time, we have decided to cancel the event for now. We will provide a full refund to everyone who registered to attend.

Originally scheduled for: September 13, 2017; 3:00 – 4:30 p.m. Eastern

[Read more…]

RTC:Rural Releases Advocacy Skill Building Toolkit

This toolkit is a guide for Centers for Independent Living and others to conduct interactive and engaging workshops to facilitate the development of advocacy skills of emerging Independent Living leaders and youth with disabilities. It describes how to introduce advocacy through the facilitation of unique activities and discussions, identifying issues of importance, and putting advocacy skills into practice. A unique approach presented in this toolkit is the use of improv to introduce, invite, and engage others into and with the world of advocacy. Read more at

Additional Talking Points on ACL’s PIII Proposal

As a follow-up to yesterday’s alert on the Administration for Community Living (ACL) PIII proposal, we are sharing these additional talking points courtesy of the New York Association on Independent Living (NYAIL).

Submit comments directly to ACL by Friday, August 11, 2017 via email

NCIL logo - National Council on Independent LivingSuggested Talking Points:

  • I oppose the proposed plan to create a new partnership for innovation, inclusion, and independence. Innovation, inclusion, and independence are not achieved by eliminating three distinct disability councils and reducing their combined funding by 57%!
  • In order to achieve real and meaningful innovation, inclusion, and independence, the President, Congress, and HHS/ACL should invest additional funds to support the work of the existing councils to prioritize the goals of innovation, inclusion, and independence.
  • The concepts of innovation, inclusion, and independence are already consistent with the purpose of Title VII of the Rehabilitation Act, as amended, which seeks “to maximize the leadership, empowerment, independence, and productivity of individuals with disabilities, and the integration and full inclusion of individuals with disabilities into the mainstream of American society.”
  • The Independent Living (cross-disability), Developmental Disability, and Traumatic Brain Injury networks have long-standing histories and populations with specific needs. They each are connected to Federal disability laws. Congressional authority is required to change any of these programs.
  • The Independent Living State Grants (Part B) are the primary funding source of many Statewide Independent Living Councils (SILCs). SILCs will cease to exist if this plan moves forward. The progress made to date will be discontinued and the proposed partnership will negatively impact people with disabilities, their families, communities and networks.
  • SILCs are consumer-controlled. This means most of the appointed members are people with disabilities. The primary responsibility of each council is to develop, monitor, and evaluate the 3-year federal Statewide Plan for Independent Living. These plans outline goals and objectives to improve the independence of people with disabilities. Eliminating these funds will halt an intentionally designed, consumer-controlled process, whereby people with disabilities have direct input into both the state plan and the direction of Independent Living.
  • In many states, these funds are used for Center operations.

In addition to using the model talking points above, we encourage you to personalize your message to speak to the impact the Independent Living Part B funds have had on you, your Center and / or the local community. Think about including an example of progress achieved in your state as a result of these funds.

Take Action: Join ACL’s Teleconference on Their Proposal to Eliminate Part B Funding

President Trump’s May budget outline proposed eliminating Independent Living Part B funding as part of a new program called the Partnership for Innovation, Inclusion, and Independence (PIII). The budget proposes ‘consolidating’ Independent Living Part B funding, State Council on Developmental Disabilities funding, and Traumatic Brain Injury funding, which would result in a$57 million loss for people with disabilities.

While this proposal was not included in the House appropriations bill, the Administration for Community Living (ACL) has been instructed to move forward. ACL staff is currently analyzing the authorizing statutes for each program impacted by the creation of the PIII program and identifying possible amendments. They are also developing language that would be included in new legislation creating the PIII grant program.

NCIL logo - National Council on Independent LivingNCIL has taken several steps to oppose this proposal. We have spoken with Congressional staff, voiced our concerns to ACL, and sent a letter of opposition to the House and Senate Appropriations Committees with several other organizations. Since then, we have continued to monitor this situation closely, and this latest movement is unacceptable. When the Independent Living (IL) Program moved to ACL, we thought it would be a home for the program that would help us grow. We did not move to ACL to see the IL Program cut!

Take Action!

ACL has started conducting outreach activities to engage with stakeholders. On August 7, from 2:30-4:30 p.m. Eastern, ACL will be holding a call for the IL community to provide input.

  • Call-in Number: 800-857-9877
  • Participant Code: 8400563

Please join this call. We need ACL to hear a unified message from the IL community that this proposal will not work. The IL community cannot and will not support these efforts, because there is no way to move forward with their proposal to cut $23 million from the IL Program without seriously harming it, which will result in harm to people with disabilities all over the country. ACL is also requesting written input. Please submit your input, using the below talking points, to by Friday, August 11.

Talking points for the call and written comments:

  • The Independent Living community does not support this proposal.
  • PIII will result in a $57 million reduction for people with disabilities, and it will cut $23 million from the Independent Living Program.
  • The PIII proposal reflects a lack of understanding of the three line items involved, each of which has distinct statutory requirements in different statutes.
  • Cuts to the IL Program will result in a reduced ability to serve consumers, major cutbacks and job losses at CILs around the country, and even CIL closures.
  • This was proposed as a cost-savings measure. The best way to save taxpayer dollars is to increase funding for the Independent Living Program. By serving consumers in their homes and communities, the Independent Living Program saves states and the federal government hundreds of millions of dollars annually.

An Update from the NCIL Rehabilitation Act / IL Funding Subcommittee: NCIL Opposes President Trump’s Proposed “Partnerships for Innovation, Inclusion, and Independence”

NCIL members around the country have been expressing concerns about the President’s proposed changes to IL funding. As a reminder, 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”. See our May 24 alert for more information on the President’s budget. The NCIL Rehabilitation Act / Independent Living Funding Subcommittee shares your concerns and has heard your requests for action, and we’d like to share with you what we’ve been doing to fight this so far.

Since the budget outline was released in May, we have taken several steps to oppose this proposal. When the proposal was made public in May, we spoke with Congressional staff about our concerns and the likelihood of this proposal being enacted. Earlier this month, NCIL sent a letter of opposition to the House and Senate Appropriations Committees with several other organizations. Just this Wednesday, we sent out an alert so NCIL members around the country have updated talking points to talk to Congress about IL funding.

As we have said previously, we are still hearing that the creation of this Partnership will not be considered by Congress. Still, NCIL and the Rehabilitation Act / IL Funding Subcommittee strongly opposes this proposal and will continue our work to fight against any efforts to enact it.

NASUAD I&R Center: I&R/A Dental Needs Survey

Source: National Association of States United for Aging and Disabilities

Dear Aging and Disability I&R Professionals,

NASUAD is currently administering a brief survey to learn more about the access of older adults and persons with disabilities to oral health services.  This survey is a follow-up to the NASUAD/NCIL 2015 I&R/A National Survey, which found that dental services were one of the most frequent unmet service requests for individuals in the community.  We’re seeking more information about the gaps, barriers, and challenges that older adults and people with disabilities face when they seek oral health services.  We are also interested in successes, promising practices, and other information regarding dental supports for individuals in these population groups.  We are requesting a response by July 21st.

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