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

Submit Comments on the Proposed Rule Requiring SSA to Report People with Representative Payees to National Instant Criminal Background Check System

Many families have a tradition of hunting. Unfortunately, the Obama Administration wants to keep people with disabilities who need help with their finances from participating in that tradition. Earlier this year, President Obama issued his Executive Action to address gun violence in the U.S. Part of this action required the Social Security Administration (SSA) to start rule-making. SSA published a Notice of Proposed Rulemaking (NPRM) concerning “Implementation of the National Instant Criminal Background Check System (NICS) Improvement Act of 2007 (NIAA)” on May 5, 2016. This proposal requires SSA to identify people on SSDI who have a representative payee and report them to the Department of Justice for inclusion in the NICS.

This proposal is fundamentally flawed, and it is highly discriminatory. We need members of the NCIL community to submit comments opposing this proposal. There is no evidence to support a connection between gun violence and having a representative payee to help manage one’s benefits due to the Social Security Administration’s (SSA’s) definition “mental impairment.”

This proposed rule would perpetuate the misguided message that people with certain disabilities are dangerous. It would violate the privacy and other rights of people receiving social security due to disability. More importantly, it would do nothing to actually address gun violence.

Please respond with your comments by July 5, 2016, the deadline. It is important that as many people and organizations comment on SSA’s misguided efforts as possible. Centers can address how this would affect your consumers and services. Others can tell your story or a personal story of someone you know who has a representative payee and how they are not dangerous. CCD, a disability coalition with which we work has provided sample comments to work from.

Action Alert: Call Your Representative to Tell Them to Oppose H.R. 2646

The bill is still bad for people with disabilities.

Representative Murphy, the bill’s author, called H.R. 2646 the “Helping Families in Mental Health Crisis Act of 2015.” Others know it as the “Murphy bill.” Last week the House Energy and Commerce (E&C) Committee amended it and voted it out of committee unanimously. View the markup and the vote.

As we’ve discussed in previous alerts, the passage of this bill would have dire consequences for people with psychiatric disabilities. Misled by dangerous assumptions and false media portrayals of those with psychiatric disabilities, supporters of this bill believe they are advocating for improved access to services and protection from violence.

In reality, this bill would take away basic civil and human rights of people with disabilities. People with psychiatric diagnoses are much more likely to be victims than perpetrators of violence. They are no more likely to be dangerous than their peers without psychiatric diagnoses. Regardless of these facts, proponents of this bill seem to believe that those with psychiatric diagnosis truly are different and less capable than their peers and should be treated as such.

Perhaps most importantly, this bill limits health privacy under the HIPAA rules. Section 401 of the Manager’s Amendment would establish a “Sense of Congress.” This section would write a controversial definition into law. There is substantial research showing that people diagnosed with mental illness are able to make reasonable decisions about their care as do people with other chronic health conditions. The bill ignores this evidence, limiting the rights of people with psychiatric disabilities to privacy and to control their own care.

Section 404 requires the Secretary of Health and Human Services to promulgate new HIPAA privacy regulations. This creates the risk that more discrimination will be written into law consistently with the “Sense of Congress.”  [Read more…]

An Update from the NCIL ADRC Subcommittee

The NCIL Aging and Disability Resource Center (ADRC) Subcommittee has been meeting every month. We have seen a lot of challenges coming our way, particularly with funding for ADRCs dwindling and some states struggling with their state budgets.

The ADRC Subcommittee will be putting out a survey to all CILs to see how or if ADRCs are working in states and communities. We have also been submitting proposals to various conferences and have presented at several aging-related conferences to discuss the importance of Independent Living philosophy in the ADRC community and how to advocate within an ADRC to stay true to the roots of IL philosophy.

For the Part A states (these are eight states that are involved with much of the Administration for Community Living’s (ACL) options counseling work and are piloting the person-centered counseling training), the online training pilot has begun. This has proven to be difficult for some, because even though it is considered 508 compliant, it is hard to maneuver with Assistive Technology such as JAWS or other screen readers. It has also proven difficult for those with English as a second language and those who are Deaf. The ADRC Subcommittee is continuing to work with NCIL and ACL on the accessibility of this training, and will continue to provide the NCIL membership with updates.

2016 Ruderman Prize in Inclusion Competition

The Ruderman Family Foundation has opened the nomination period for its international Ruderman Prize in Inclusion, which awards companies and organizations operating innovative programs and services that foster the full inclusion of people with disabilities. Now in its fifth year, the Ruderman Prize shines a spotlight on the important work being done, celebrates models that can be replicated elsewhere and ensures that resources are available to allow them to continue. This year priority will be given to innovations in the fields of technology, entertainment, art & fashion, media, social businesses and advocacy. Past winners include organizations in Russia, United Kingdom, United States, Mexico, Israel, South Africa, Australia, Canada and Argentina. Read more and apply at

Information Alert: Update on FY Funding Cuts

In an alert in early June, we asked that you contact us and share your organization’s experiences with FY2016 Part C funding cuts. Since then, we have been using the information we received from you to work with House and Senate appropriations staff in order to try to figure out a solution.

Thank you to those who got in touch with us. So far, we have heard from Arizona, California, Florida, Georgia, Illinois, Indiana, Kentucky, Louisiana, Maryland, Montana, Michigan, New Jersey, New York, North Carolina, Ohio, South Carolina, Tennessee, Texas, Virginia, and Wisconsin. If your state isn’t listed above and you have noticed a cut to your Part C funds, please reach out and let us know by contacting NCIL Policy Intern, Matt Indimine at

We are communicating with ACL and working with appropriators to try to resolve this issue and restore funding, but we need your help! Please contact members of the House Appropriations Subcommittee on Labor, Health and Human Services, and Education (L-HHS-Ed) and members of the Senate Appropriations Subcommittee on L-HHS-Ed to tell them we need them to figure out a solution. The Independent Living Program cannot meet the increasing needs of our consumers around the country with our current budget, and it will be absolutely impossible with even less money. Please contact members of these Subcommittees and tell them this needs a fix! And while you’re at it, use NCIL’s talking points to tell them how important the IL program is and ask them to advocate for increased funds for IL!

#ORLANDO Healing Space Call

The National Council on Independent Living’s Queer Caucus and Youth Caucus are hosting Healing Space call to honor the lives of those lost by the #PULSE tragedy in #ORLANDO, and to create a space to process the trauma associated with violence against LGBTQIA+ individuals. This call is aimed to center the narratives of those in the disability community who are also a part of the LGBTQIA community. We will mourn, discuss, process, and heal together. All who can respect this space are welcome.

To honor the lives of those lost by the #PULSE tragedy and to create a space to process the trauma associated with violence against LGBTQIA+ individuals

  • Thursday, June 23rd at 3:00 p.m. Eastern
  • Call-in Number: 1 (605) 475-5900
  • Passcode: 697-3837
Orlando Pulse Healing Space: To honor the lives of those lost by the #PULSE tragedy and to create a space to process the trauma associated with violence against LGBTQIA+ individuals - Thursday, June 23rd at 3:00 p.m. Eastern; Call-in Number: 1 (605) 475-5900; Passcode: 697-3837. Hosted by the National Council on Independent Living’s Queer Caucus and Youth Caucus

Orlando Pulse Healing Space: To honor the lives of those lost by the #PULSE tragedy and to create a space to process the trauma associated with violence against LGBTQIA+ individuals – Thursday, June 23rd at 3:00 p.m. Eastern; Call-in Number: 1 (605) 475-5900; Passcode: 697-3837. Hosted by the National Council on Independent Living’s Queer Caucus and Youth Caucus

Deadline for Hotel Reservations Approaching!

The deadline to reserve your room at the Grand Hyatt and the Fairfield Inn for the NCIL discounted group rate is quickly approaching!

Logo - Solidarity - Everybody In - Annual Conference on Independent Living 2016Grand Hyatt Washington Group Rate Deadline: 5:00 p.m. Eastern, Tuesday, July 5, ($244 single / double occupancy + plus tax). To make your reservations online, use NCIL’s custom link, or call the hotel at 1-800-233-1234 (voice / TTY).

Fairfield Inn & Suites Group Rate Deadline: 5:00 p.m. Eastern, Monday, June 27, ($219 single / double occupancy + plus tax). To make your reservations online, use NCIL’s custom link, or call the hotel at 1-888-236-2427 (voice / TTY).

The hotels may honor the discounted rate after the deadline, but they are not contractually obligated to do so. Be sure to identify yourself as a NCIL Conference attendee either way.

Participants must register for the Conference before being eligible for a discounted rate at the hotels.

Visit our 2016 Annual Conference web page for complete details on this year’s conference.

Urgent Action Alert: Nursing Homes Are Not Community Living!

In proposed rules regarding payment for inpatient rehabilitation facilities and skilled nursing facilities, the Centers for Medicare and Medicaid Services (CMS) has proposed a quality measure for “discharge to community”.

Unfortunately, this measure would count transfer to a nursing home as a community discharge. This is most dangerous for people in a skilled nursing facility who could be transferred to the Medicaid-funded section of the nursing home on paperwork only, remain in the same facility, and then be counted as a “discharge to community.”

Obviously, placement in a nursing home is not the community, and facilities should not be rewarded based on quality measures that pretend it is.

We have a very tight timeline and very few comments have been submitted so far. Comments are due Monday, June 20. 

Take Action

  1. Submit your comments online. Sample text is available below for use. Feel free to edit as needed.
  1. Sign on to the Coalition to Preserve Rehabilitation letter (Word) by emailing Steve Postal at by 5:00 p.m. on Monday, June 20.

[Read more…]

An Update on Air Travel from the NCIL Transportation Subcommittee

Air travel has been a challenge for people with disabilities for years. Some of the major issues include:

  • Inaccessible websites for travel or kiosks
  • Non- accessible airports
  • Lack of disability etiquette for airport staff, airline personnel, TSAs and those transporting individuals to the airport (hotel buses, taxis, Transportation Networking Companies (Uber, Lyft), trains / high speed rail and private transportation bus companies
  • Lost or damaged Durable Medical Equipment, Assistive Technology, or other equipment
  • Much longer waits than non-disabled customers
  • Disregard for personal privacy and rights, including unnecessary ‘pat downs’ for the sake of safety (worse since 9/11)
  • Stated disability or ‘special needs’ assistance which can often make things worse than if you came without prior notification (pre-check, etc.) despite policies and enforcement that are to make it easier
  • Mistreatment of service animals
  • Lack of adequate seating or foot space
  • No or limited access to bathrooms on planes
  • Issues with tie downs for wheelchairs

NCIL Efforts:

NCIL has been at work on several areas of public policy and related implementation regarding air travel for individuals with disabilities. While it’s fair to say that NCIL’s efforts are disability-focused, others benefit from as well, including seniors and others that may not consider themselves members of either of these communities.  [Read more…]

CIL Youth Transition Coordinators: Apply for Funding to Attend the 2016 Annual Conference on Independent Living by June 21!

The National Council on Independent Living (NCIL) is excited to announce a new opportunity for our Youth Transition Coordinators at CILs. Through the generous support of the Mitsubishi Electric America Foundation (MEAF) we have received a grant called the Greater Washington Internship Coalition M>PWR Project. This grant will allow us to sponsor 3 Youth Transition Coordinators to attend the 2016 NCIL Conference in Washington, DC this summer!

Logo - Solidarity - Everybody In - Annual Conference on Independent Living 2016As previously mentioned, NCIL is very dedicated to youth advocacy AND building a network for those of you who work in the youth transition field. Visit NCIL’s 2016 Conference web page for more information about this year’s NCIL Conference. There will be ample opportunities for the Youth Transition Coordinators to learn about WIOA, receive resources, and programming ideas through the 24 available workshops. On average, there are 1,000 conference participants that coordinators will be able to network with. Additionally, there will be a small time set aside for Youth Transition Coordinators to have an in depth dialogue about youth programming.

If you would like to attend the 2016 NCIL conference please fill out the Youth Transition Coordinator Scholarship Application by June 21, 2016.