the advocacy monitor

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

Aging and Disability

An Update from the NCIL ADRC Subcommittee

At this year’s Annual Conference on Independent Living, some of NCIL’s Aging and Disability Resource Center (ADRC) Subcommittee members were able to meet with Bob Williams about the lack of disability integration that was happening in ADRCs. Thankfully, we were listened to. Bob Williams has agreed to meet with us to become a liaison between the ADRC Subcommittee and the Administration for Community Living (ACL) to assist us in our uphill battle to bring the D back into ADRCs.

The online and in-person training has ended for the Part A (pilot) states of the ADRC. This training has many flaws when it comes to access for everyone and feedback reflects this, but many agree that for advocates that are just joining the movement, this is helpful training that was not available before. It allows advocates to devise tools that will help in the field when bringing in new members to the Independent Living community.

The ADRC Subcommittee is always looking for new members. We meet once a month via phone. If you are interested in becoming a member, please contact Mary Margaret Moore at or Ericka Reil at

NASUAD, in Partnership with NCIL, Releases I&R/A Survey Report

The National Information and Referral Support Center, administered by NASUAD, in partnership with the National Council on Independent Living (NCIL), shares findings from the aging and disability I&R/A field in the report The Changing Landscape of Aging and Disability Information and Referral/Assistance: 2015 Survey of Aging and Disability I&R/A Agencies. This report captures the current state of I&R/A service provision, including trends and developments, challenges and opportunities, and promising practices, through survey responses provided by representatives from state agencies on aging and disability, Area Agencies on Aging, Aging and Disability Resource Centers, Centers for Independent Living, non-profit human service organizations and national organizations. Key themes to emerge from the survey data are:

  • Theme 1: Funding and Sustainability are Significant Concerns among Aging and Disability I&R/A Agencies;
  • Theme 2: Partnerships and Networks Continue to Evolve to Serve Both Older Adults and Individuals with Disabilities;
  • Theme 3: A Changing Environment and Expanding Roles Provide New Opportunities and Challenges for I&R/A Agencies;
  • Theme 4: Quality Matters to Effective I&R/A Service Delivery; and
  • Theme 5: The Use of Technology has Increased, but There Remains Room for Growth.

Survey findings underscore that aging and disability I&R/A agencies are operating in a time of change. In a policy, fiscal, and service delivery environment that presents both challenges and potential opportunities, aging and disability I&R/A agencies must continue to cultivate partnerships and leverage innovations that enhance and modernize the provision of I&R/A services. View the report.

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.

Reminder: Understanding Disability – Call to Share Your Experience Aging with A Disability

Your help is needed! A PhD candidate of the University of Maryland, Baltimore County is looking for people aged 60 and over who have lived all or the majority of their lives with a disability and who are willing to share their experiences about their lives with a disability and about getting older. This is a completely voluntary study! Anyone who identifies as an aging person living with a disability since their 22nd birthday may participate.

What’s in it for me, you may ask?

By participating in my study you may gain good feelings about your role in a study that is intended to help better understand the lives of those aging with a lifelong disability. You may possibly help improve the lives of others in the future.

To find out more about the study or to speak to the researcher about how you or a loved one can participate, please contact Jennifer Howard at or (262) 910-1540.

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

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.