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

Aging and Disability

Free Business Acumen Webinar: Planning to Plan? Tools to Use to Help You Better Understand Your Current Business Environment

Source: NASUAD: National Association of States United for Aging and Disabilities

Business Acumen Center Logo - Providing Resources to Sustain Disability OrganizationsBusiness Acumen describes an organization’s ability to quickly and keenly understand and address a business situation in a manner that will likely lead to a good outcome. The first step in doing so is in understanding the world around you. As a Community Based Organizations (CBO*) serving people with disabilities, you may be seeking to diversify your payer portfolio or develop your business as a response to a new method of delivery such as a state transition to Managed Long Term Services and Supports (MLTSS). To ensure that you are fully informed when you begin, you will need to conduct some background research on the current or anticipated political environment, economic conditions, demographics and changes or opportunities within related organizations. Each of which will help you understand the environment you are in or will be entering.  [Read more…]

Five State Teams Selected for Disability Network Business Acumen Learning Collaborative

The National Association of States United for Aging and Disabilities (NASUAD) is pleased to announce the five state teams selected for participation in the Disability Network Business Acumen Learning Collaborative. This effort is led by NASUAD in partnership with nine national organizations*.

Business Acumen Center Logo - Providing Resources to Sustain Disability OrganizationsEach of the five state teams includes at least one state agency and community-based organizations (CBO**) serving persons with disabilities (physical, intellectual and/or developmental). Most also include an integrated healthcare entity or other organization dedicated to the sustainability of CBOs serving people with disabilities. The five State teams represent Maryland, Missouri, New Hampshire, New York and Texas. 

These teams will work together to develop and implement business-related strategies to state-specific challenges to integrating long term services and supports and healthcare services. Collectively, these teams will share what they learn from their efforts including promising practices that can be used to help other CBOs enhance their current business relationships and diversify their business portfolios. The learning collaborative will launch at the 2017 HCBS Conference being held in Baltimore, MD, August 27 – 31.
[Read more…]

Are They Buying What You’re Selling? An Inside Look at What Health Plans Need from Community Based Organizations

Health plans responsible for Managed Long Term Services and Supports (MLTSS) not only care about the health and well-being of their members, but they also have a direct goal to help those individuals remain in their homes and communities whenever possible. Community Based Organizations (CBO)* are in a unique position to partner with health plans to successfully manage the services and supports that impact people with disabilities and their social determinants of health, which when properly addressed facilitates positive outcomes for the person served and avoid outcomes that limit their ability to remain in their home and community– things that health plans and CBOs alike want to avoid. Join us on July 26, 2017 from 12:30 – 1:30P Eastern as Kristin Murphy, Director of Market Development with Centene will provide an insider’s look into what health plans seek when partnering with Community Based Organizations.

Learning Objectives:

  • Understand what health plans look for when working with CBOs
  • Understand how you may maximize your partnerships with health plans
  • Understand where CBO and health plan goals align

Business Acumen Center Logo - Providing Resources to Sustain Disability OrganizationsThis one hour webinar is available as part of the Disability Business Acumen Grant provided by the Administration for Community Living to the National Association of States United for Aging and Disabilities in collaboration with nine national partners*.


* CBO is a broad term to describe local organizations that offer community living services and supports to advance the health, well-being, independence, and community participation of people with disabilities and older adults. CBOs include Centers for Independent Living, developmental disability organizations, University Centers for Excellence in Developmental Disabilities Education, Research & Service, behavioral health organizations, Protection and Advocacy Agencies, Aging and Disability Resource Centers, Area Agencies on Aging, aging services organizations, faith-based organizations, Native American tribal organizations (American Indian/Alaskan Native/Native Hawaiian), nutrition program providers and other local service providers for persons with disabilities and/or older adults.

** Grant Partners include: American Association on Health and Disability (AAHD), American Network of Community Options and Resources (ANCOR), The Autistic Self Advocacy Network (ASAN), National Association of State Directors of Developmental Disabilities Services (NASDDDS), National Association of States United for Aging and Disabilities (NASUAD), National Council on Independent Living (NCIL), National Council on Aging (NCOA), National Disability Rights Network (NDRN), Mercer, University of Minnesota – Institute of Community Integration

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)