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

Aging and Disability

An Update from the NCIL ADRC Subcommittee

NCIL’s Aging & Disability Resource Center (ADRC) Subcommittee is still headway and waves when it comes to making sure Independent Living philosophy and disability rights laws stay true to the values of our community. When our members are not teaching other ADRC members about the Independent Living Movement, we are teaching about disability rights laws through trainings and making sure that this information is accessible to everyone – even if that means slowing down time frames of when trainings need to be done for the Administration for Community Living (ACL).

Subcommittee members have also been supporting each other at our CILs at our monthly meetings, letting each one of our members know that we are not alone when it comes to changes and how we can best support each other. It has been said that the most dangerous statement said is “it’s always been done this way”. Change doesn’t have to be bad but it can be hard. The ADRC Subcommittee has been putting out workshop proposals to every conference we come across in order to make sure that we have a voice at the table.

For further information on the ADRC Subcommittee, contact Ericka Reil at [email protected].

State News – Massachusetts: Greater North Shore Organization Renamed “Greater North Shore Link”

Danvers, Massachusetts: Executive Director Teresa Arnold revealed the new name of the ADRC of the Greater North Shore on November 18, 2015. Ms. Arnold states, “The new name, Greater North Shore Link, is succinct and more clearly describes the Mission of the organization, which is to promote a single, coordinated system of information and access for all persons seeking long term services and supports, regardless of age, disability or income.” Announcement of the new name was made at the November Partners Meeting, the group which meets every other month, attended by over 60 Partner organizations.  [Read more…]

Action Alert: We Need You To Act on the Murphy Bill!

Today, a harmful piece of legislation, the Helping Families in Mental Health Crisis Act of 2015 (H.R. 2646, also known as the Murphy Bill) is being marked up by the House Energy and Commerce Health Subcommittee. If one of your Representatives serves on this Subcommittee (see list below), please contact them right away.

We have drafted a sample letter. Enter your zip code at the NCIL Action Portal to view, edit, and send it to your Representative.

NCIL logo - National Council on Independent LivingPlease also contact them via phone, Twitter, and Facebook, and tell them NOT to support this bill in its current form! Please tell your friends, neighbors, and co-workers to do the same.

Provisions in this bill will dismantle many of the civil and human rights of people with psychiatric disabilities:

  • The bill is based on an inherently false assumption that people labeled with psychiatric disabilities are dangerous and pose some sort of threat to society. This assumption is untrue as people with psychiatric disabilities are disproportionately more likely to be the victims of violence rather than perpetrate it ourselves.
  • The proposed bill would implement significant changes in the Substance Abuse and Mental Health Services Administration (SAMHSA) threatening effective existing, evidence-based programs such as peer support. It would also place mental health professionals solely in charge of decisions directly affecting people with psychiatric disabilities. The bill would increase the use of forced treatment because mental health block grants for states would be contingent on states supporting involuntary outpatient treatment. Numerous studies have shown that forced treatment drives people away from the mental health system instead of encouraging people who want mental health treatment to voluntarily obtain it. Likewise, the bill also proposes to increase institutionalization with changes to the Institutions for Mental Diseases (IMD) exclusion.
  • The bill would seriously erode civil and human rights by limiting the work in which Protection and Advocacy for Individuals with Mental Illness (PAIMI) is permitted to engage. In a June 9, 2015 document distributed by the National Disability Rights Network (NDRN) the potential impact this change would have is detailed. “The national network of Protection & Advocacy (P&A) organizations have been assisting children and adults with psychiatric disabilities and their families since 1986 under the PAIMI program, to prevent abuse and neglect, ensure access to the services and supports, and protect civil and human rights. In Fiscal Year 2014, the P&As provided advocacy assistance to 13,936 individual clients through the PAIMI program, with issues including dangerous restraint and seclusion practices; failure to provide medical or mental health treatment; inappropriate and excessive use of medication; sexual assault; financial exploitation; lack of discharge planning; and discrimination in employment, housing and other areas. P&As successfully closed through the PAIMI program 313 systemic advocacy projects and litigation cases that potentially benefits over 27 million individuals …. and investigated 993 suspicious deaths.”
  • Finally, this bill proposes to create lower standards of privacy for people labeled with psychiatric disabilities due to proposed changes to HIPAA regulations.

Additional information on the bill can be found at on the National Disability Rights Network (NDRN) H.R. 2646 web page.

Please contact the House Energy and Commerce Health Subcommittee right away!

List of House Energy and Commerce Health Subcommittee


  • Joe Pitts (PA), Chairman
  • Brett Guthrie (KY), Vice Chairman
  • Ed Whitfield (KY)
  • John Shimkus (IL)
  • Tim Murphy (PA)
  • Michael C. Burgess, M.D. (TX)
  • Marsha Blackburn (TN)
  • Cathy McMorris Rodgers (WA)
  • Leonard Lance (NJ)
  • Morgan Griffith (VA)
  • Gus Bilirakis (FL)
  • Billy Long (MO)
  • Renee Ellmers (NC)
  • Larry Bucshon (IN)
  • Susan Brooks (IN)
  • Chris Collins (NY)
  • Joe Barton (TX)
  • Fred Upton (MI) (Ex Officio)


  • Gene Green (TX), Ranking Member
  • Eliot L. Engel (NY)
  • Lois Capps (CA)
  • Jan Schakowsky (IL)
  • G. K. Butterfield (NC)
  • Kathy Castor (FL)
  • John Sarbanes (MD)
  • Doris O. Matsui (CA)
  • Ben Ray Lujan (NM)
  • Kurt Schrader (OR)
  • Joseph P. Kennedy, III (MA)
  • Tony Cardenas (CA)
  • Frank Pallone, Jr. (NJ) (Ex Officio)

ACL “No Wrong Door” System Grants Help Streamline Access to Services and Supports

Source: Administration for Community Living

For many older adults and people with disabilities, the key to remaining independent can be something as simple as a home-delivered meal, a ramp for their homes, or a few hours of respite for a family caregiver. Unfortunately, an often disjointed maze of eligibility criteria, forms, programs, and agencies can prevent even the most determined individuals from obtaining these critical supports. The Administration for Community Living (ACL) has been helping states streamline their processes and implement systems that make it easier for people to learn about—and access—the services they need.

In these “No Wrong Door” systems, multiple state and community agencies coordinate to ensure that regardless of which agency people contact for help, they can access information and one-on-one counseling about the options available across all the agencies and in their communities. The goal is to enable people to make informed decisions based on the full range of available services. The No Wrong Door systems also provide assistance in accessing services, including help in completing applications for various public and private programs.

Last week, ACL awarded nearly $5 million in grants to 13 states to further develop these “No Wrong Door” systems.  [Read more…]

Webinar: National Aging/Disability I&R/A Survey Findings

On Thursday, October 8, 2015 from 3:00-4:30 p.m. Eastern, the National I&R Support Center will host a webinar with NCIL on findings from the 2015 Aging and Disability Information & Referral/Assistance National Survey.

In 2015, NCIL partnered with the National Association of States United for Aging and Disabilities (NASUAD) to conduct a national survey of I&R/A agencies in the disability and aging networks. This survey gathered data on key topics impacting I&R/A agencies, including referrals and service needs, use of social media, partnerships and system building, standards and quality assurance, training and certification, private pay, and Medicaid services.

Presenters are Nanette Relave, National I&R Support Center Director at NASUAD, and Lindsay Baran, Policy Analyst at NCIL.

No pre-registration is required to participate in the webinar. Information to log into the audio and webinar portions is provided below.

Join the webinar:

  • On a computer, use any browser with Flash. Nothing to download.
  • On a phone or tablet, launch the app and enter meeting code: nasuadwebinar

Join the audio conference:

  • Dial 888-346-3659
  • Access Code 33688#

Real Time Captioning:

NCIL Welcomes New ADRC Subcommittee Co-Chair

NCIL would like to welcome Ericka Reil to the ADRC Subcommittee. Ericka comes to us from the Vermont Center for Independent Living in Montpelier, Vermont. Ericka has worked for the VCIL for eleven years in many different capacities, most recently and currently, she is a Peer Advocate Counselor Coordinator. She is also Chair of the Barre City ADA Committee, Chair of the Protection and Advocacy for Individuals with Mental Illness Program (PAIMI) Council, and sits on the Board of Disability Rights Vermont. She has also been involved in ADAPT and National People’s Action (NPA).

Ericka ReilWhat interests Ericka in disability issues is that not only was she born with Marfan’s Syndrome, she also acquired a mental health diagnosis. She also has a son who is on the Autism spectrum. She would like to help build a world where her son doesn’t have to feel that he has to hide his disability the way that she did before she found out about the ADA and Independent Living. “I don’t want anyone to be ashamed of who they are. I am disabled and I am proud. 15 years ago I probably would have never have uttered those words, but now I don’t care who hears them,” she says.

An Update from the NCIL ADRC Subcommittee: Disability & Access At 2015 AIRS Conference

The 2015 Alliance of Information and Referral Systems (AIRS) Conference took place in Dallas, Texas. The AIRS Conference is a great experience that features information specialists from 211s, Area Agencies on Aging, Veterans Affairs, and now Centers for Independent Living coming together and talking about common issues, problem solving, and networking.

Mary Margret Moore, Ericka Reil, and Lindsay Baran where there as presenters this year, and attended various workshops and planned events that AIRS hosted. But all came back with the same conclusion: access for people with disabilities was not well planned. There were times that the accessible doors to the conference area were broken or locked; and the workshop room did not allow room for wheelchairs other mobility aides. The luncheon area had poor acoustics and did not allow room for people with wheelchairs or other mobility aides.

However, when NCIL presented, people stopped and listened because the information was new to them. They were very interested in what NCIL was and wanted more information on how to include NCIL in their organizations. People seemed very hungry for disability information.

This seemed to really ring true when Mary Margret Moore and Ericka Reil presented on disability. Even though many of the people in the audience knew a lot of the information, they still wanted it. People approached them after the workshop, in the hallways and outside, asking questions and thanking them for being there and inviting them to their state to present. Each and every time, they were encouraged to talk to their local CIL and include them if they already had not.

The next AIRS Conference happens in St. Louis, Missouri and Lindsey, Mary Margret, and Ericka hope to be back again.

Information Alert: Funding Opportunity for States to Enhance Consumer Access to Long-Term Services and Supports through No Wrong Door Systems

At the end of May, the Administration for Community Living (ACL), Centers for Medicare & Medicaid Services (CMS), and the Veterans Health Administration (VHA) announced a funding opportunity for states to enhance consumer access to long-term services and supports through No Wrong Door (NWD) systems, entitled Transforming State LTSS Access Functions into a No Wrong Door System for All Populations and All Payers: Statewide Implementation. This grant builds on previous Aging and Disability Resource Center (ADRC) efforts and is part of a years-long effort to streamline access to LTSS for seniors and individuals with disabilities of all ages and all incomes.

Applications are due July 27, 2015, and up to six awards with an award ceiling of $850,000 will be granted. Applicants must be from one of the 25 states that received a planning grant in 2014.

Applicants must be a state entity designated by the Governor, and the application must involve the state unit on aging, state entities serving people with disabilities, and the state authorities administering mental health services.

Action Alert: Act Today to Support Loretta Lynch for Attorney General!

In the last 30 years, no nominee for US Attorney General has waited longer than Loretta Lynch. Loretta Lynch is more than qualified to be our next Attorney General and demonstrates a steadfast commitment to justice.

We need your help spreading the word. Please contact your Senators, especially if they are Republican. We need Senator Mitch McConnell (R-KY) to move this vote to the full Senate today!

Loretta LynchWe need a push to all Senators, but especially from the following states: Alaska, Georgia, Illinois, New Hampshire, Nevada, Ohio, Pennsylvania, South Carolina, Tennessee, and West Virginia.

Act Now:

  1. Call your Senator: Contact your Senators at 1-866-338-5720. Make sure you give them your name and identify yourself as a constituent. Tell them, “Please Confirm Loretta Lynch as Attorney General now,” and why it is important to you. See Talking Points for more information.
  2. Send a letter (organizations and individuals): Draft your own letter or use our Sample Letter by adding your information, including name, address, and why this is important to you. Then, email or use social media to get it to your Senator!
  3. Use social media to tell your Senator to vote to confirm Loretta Lynch: All US Senators are on Twitter and their teams follow these closely. Twitter Hashtags: #LorettaLynch, #ConfirmLynch. You may also wish to join the Leadership Conference on Civil and Human Rights’ Twitter Storm, which occurs every Thursday 11:00 a.m. Eastern.
  4. Media outreach: Write Op-Eds for local news and talk with your local media.
  5. Thank the Republican Senators who have publicly stated that they will vote to confirm Lynch: Collins (ME), Flake (AZ), Graham (SC), and Hatch (UT).

[Read more…]

2015 Aging and Disability I&R/A National Survey Deadline Extended

NCIL has been working in partnership with NASUAD’s Information & Referral Support Center on the 2015 Aging and Disability I&R/A National Survey. We are requesting your assistance with the dissemination of the survey, which is designed to assess the state of Information and Referral/ Assistance (I&R/A) systems serving older adults and persons with disabilities. Findings from the survey will highlight important trends and developments in the provision of I&R/A services. The results of the survey will be compiled into a final report and shared with NCIL and NASUAD members, as well as the I&R/A network as a whole.

We are requesting that you share the survey with I&R/A lead staff at your agency so that they may complete the survey. Given the comprehensive nature of the survey, NASUAD has extended the deadline for responses to March 31.

Please complete the survey online if you are able. The survey is also available in plain text.

[Read more…]