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

Independent Living & The Rehabilitation Act

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

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!