the advocacy monitor

independent living policy for wonks and wonkettes

Action Alert: Protect Access to Specialized Wheelchairs!

The Centers for Medicare and Medicaid Services (CMS) plan to apply competitive bid pricing to Complex Rehab wheelchair accessories beginning January 1, 2016. Complex Rehab Technology (CRT) includes the individually configured wheelchairs and equipment many people with disabilities use, and this change will further already limited access to 171 essential “accessory” codes including seating systems, head rests, tilt and lift, and more.

Earlier this year, 101 Representatives (PDF) and 25 Senators (inaccessible PDF) sent bipartisan letters to CMS requesting that this policy be rescinded. Unfortunately, CMS still plans to move forward with implementation. Unless Congress acts, payment rates will be reduced by 20% to over 40%. Not only does this violate the intent of past Congressional legislation (Medicare Improvements for Patients and Providers Act of 2008), but it will significantly decrease the availability of the individually configured wheelchair systems that many people with disabilities rely on.

H.R. 3229 and S. 2196 have been introduced in Congress to provide a legislative “technical correction” to clarify that CMS cannot apply Medicare competitive bidding pricing to the accessories used with complex rehabilitation wheelchairs. This legislation would protect access for the many people who use this technology. However, the legislation must be enacted by December 31, 2015, and Congress needs to hear from their constituents across the nation!

Please take action today!

Step 1: Visit

Step 2: Use the “Send Email” link to email your Members. Just supply your address and your Members will be identified. A suggested message is provided that you can send as is or modify.

Step 3: Follow up using the “Make A Call” link using the additional guidelines provided.

Centers for Independent Living: Please Take Action Against the Murphy Bill!

Earlier this month, the Health Subcommittee of the House Energy and Commerce Committee marked up H.R. 2646, the “Murphy Bill” on Mental Health. This weekend, Paul Ryan, newly elected Speaker of the House, commented that passing the bill is a priority in order to address mass shootings.

NCIL logo - National Council on Independent LivingThis is simply promoting prejudice against people with disabilities. There is no evidence that any of the policy changes under the Murphy Bill could have an effect on violence. Many studies confirm that people diagnosed with “mental illness” are no more likely to commit violence than similarly situated individuals not diagnosed. Factors such as age, sex, where a person lives, and use of alcohol or other drugs have the strongest correlation with violence.

H.R. 2646 includes several provisions harmful to people with disabilities:

  • People with psychiatric disability will have a lower level of protection under federal health and education privacy rules;
  • It promotes institutional services by modifying the Institutions for Mental Diseases (IMD) rule to allow Medicaid payments for hospitals and nursing facilities for people with psychiatric disability;
  • It promotes involuntary treatment (euphemistically called “Assisted Outpatient Treatment”), limiting federal aid for community mental health services to states that fail to have laws conforming to the new standards; and
  • It restricts protection and advocacy services for people with psychiatric and other disabilities under the federal P&A program.

The bill also dismantles the federal Substance Abuse and Mental Health Services Administration, replacing it with a new bureaucracy under a new Assistant Secretary for Health and Human Services. The new Assistant Secretary would have to be a Medical Doctor or Ph.D. Psychologist. These provisions include restrictions on peer-to-peer services and a decreased role in policy for stakeholders other than doctors and psychologists.

Some national mental health organizations have supported the bill because it reauthorizes a number of federal mental health programs, including the Garrett Lee Smith suicide prevention program. It also authorizes new programs. However, these are not likely to come with any new funding. Other than the Medicaid changes (estimated to cost $3 billion or more), there is no anticipated increase in funding for services.

The bill has passed through the Health Subcommittee and is expected to have a markup in the full Energy and Commerce Committee within the next few weeks.

Take Action

  1. Writing the House Energy and Commerce Chair and Ranking Member is the highest priority. Please contact Representative Fred Upton (Chairperson) and Representative Frank Pallone (Ranking Member).
  2. The bill may also require action by the House Education and the Workforce Committee (because of the Educational Privacy provisions) and the Ways and Means Committee (because of the Medicaid / Medicare provisions). Please contact your Representatives, especially those on the House:

Tell them to oppose H.R. 2646 because we cannot tolerate discrimination against people with disabilities.

It would also help to work with other local and state disability advocates to get their help to stop this bill. The NCIL Mental Health Subcommittee can use help in its work to protect the civil rights of people with psychiatric disabilities.

Urgent Action Alert: We Must Defeat the Murphy Bill!

Earlier this month, the Helping Families in Mental Health Crisis Act of 2015 (H.R. 2646, also known as the Murphy Bill) passed through the House Energy and Commerce Health Subcommittee. This is a dangerous bill that has been gaining public support, and we need you to contact your Representatives now to try and stop it.

Under the guise of violence prevention, provisions in this bill strip away many of the civil and human rights of people with psychiatric disabilities; rights for which we have been fighting for decades. This bill is based on inherently false assumptions about people labeled with psychiatric disabilities, and it perpetuates dangerous stereotypes and misinformation. We in the disability community know that people with psychiatric diagnoses are no more likely to commit violence, and in fact are much more likely to be victims of violence, than those without a diagnosis. It is urgent for our community to come together to take action.

Here are some of the ways the bill would be harmful to people with disabilities. H.R. 2646 would:

  • Significantly change the Substance Abuse and Mental Health Services Administration (SAMHSA), thereby threatening existing, effective programs such as peer support.
  • Promote involuntary treatment (euphemistically called “Assisted Outpatient Treatment”), limiting federal aid for community mental health services to states that fail to have laws conforming to the new standards.
  • Increase institutionalization by modifying the Institutions for Mental Diseases (IMD) exclusion, which would allow Medicaid payment for nursing homes and hospitals.
  • Limit the work in which Protection and Advocacy for Individuals with Mental Illness (PAIMI) is permitted to engage.
  • Create lower standards of privacy for people with psychiatric diagnoses due to changes to HIPAA regulations.

Please reach out to your Representatives right away and tell them NOT to support this bill in its current form! The bill will likely have a markup in the full House Energy and Commerce Committee in the coming weeks, so this is even more crucial if one of your Representatives serves on the committee (list below)!

A sample letter is available at our Action Portal for you to use or modify as you see fit.

You may also contact them via phone, Twitter, and Facebook, and tell them not to support this discriminatory bill!

House Energy & Commerce Committee Members


  • Fred Upton (MI) – Chairman
  • Joe Barton (TX) – Chairman Emeritus
  • Ed Whitfield (KY)
  • John Shimkus (IL)
  • Joseph R. Pitts (PA)
  • Greg Walden (OR)
  • Tim Murphy (PA) – Legislation Sponsor
  • Michael C. Burgess (TX)
  • Marsha Blackburn (TN) – Vice Chairman
  • Steve Scalise (LA)
  • Bob Latta (OH)
  • Cathy McMorris Rodgers (WA)
  • Gregg Harper (MS)
  • Leonard Lance (NJ)
  • Brett Guthrie (KY)
  • Pete Olson (TX)
  • David McKinley (WV)
  • Mike Pompeo (KS)
  • Adam Kinzinger (IL)
  • Morgan Griffith (VA)
  • Gus Bilirakis (FL)
  • Bill Johnson (OH)
  • Billy Long (MO)
  • Renee Ellmers (NC)
  • Larry Bucshon (IN)
  • Bill Flores (TX)
  • Susan Brooks (IN)
  • Markwayne Mullin (OK)
  • Richard Hudson (NC)
  • Chris Collins (NY)
  • Kevin Cramer (ND)


  • Frank Pallone, Jr. (NJ)
  • Bobby L. Rush (IL)
  • Anna G. Eshoo (CA)
  • Eliot L. Engel (NY)
  • Gene Green (TX)
  • Diana DeGette (CO)
  • Lois Capps (CA)
  • Michael F. Doyle (PA)
  • Jan Schakowsky (IL)
  • G. K. Butterfield (NC)
  • Doris O. Matsui (CA)
  • Kathy Castor (FL)
  • John Sarbanes (MD)
  • Jerry McNerney (CA)
  • Peter Welch (VT)
  • Ben Ray Lujan (NM)
  • Paul Tonko (NY)
  • John Yarmuth (KY)
  • Yvette D. Clarke (NY)
  • David Loebsack (IA)
  • Kurt Schrader (OR)
  • Joseph P. Kennedy III (MA)
  • Tony Cardenas (CA)

Lastly, please consider joining NCIL’s Mental Health Subcommittee. Thank you for your commitment to Independent Living and disability rights!

NCIL Youth Caucus Statement in Solidarity with Students of Color

To the Black students and all students of color who are battling racism at Mizzou, across the country, and around the world: we, disabled activists of the National Council on Independent Living Youth Caucus, move with you in solidarity. We are in awe of your courage for confronting racism at your schools. Your vulnerability in speaking candidly about your experiences, your strength in organizing protests in huge numbers, and your effectiveness at holding the administrators at your schools accountable to not meeting your needs is powerful. You are powerful. We support you.

To the disability community: we must speak out about racism. We need to recognize that the liberation of disabled people is only possible if we are fighting for racial justice. This means as a community we must stand with Black people and all people of color.

Justice for disabled people is impossible without prioritizing the needs of disabled people of color. Disabled Black people and people of color specifically are being institutionalized—because of racial injustice as well as ableism. When the disability community works to free our people from institutions that needs to mean freeing all people from all institutions. Independence means keeping people out of nursing homes and psychiatric hospitals, and it also means keeping people out of prisons. Independence is freedom from police brutality. Independence is being safe and supported in college because independence means access to resources and access to spaces.

The fight for independent living is about all people living safely in their communities. Focusing only on disability does not support the people who make up our community because it prevents people from bringing their whole, multifaceted, selves into our movement. Ultimately, we exclude disabled people of color from disability communities if we do not prioritize their participation and leadership.

Thus, we affirm that the collective liberation of disabled people needs to center the liberation of disabled people of color.

The Youth Caucus is committed to working at the intersections of ableism and racism. We are making concrete changes in our work to address the ways we fail people of color.

We commit to:

  • Listening to people of color and supporting them in the ways that they ask for.
  • Deliberately creating spaces to address systemic, internalized, institutional and blatant racism.
  • Purposefully building relationships with and amplifying the voices of people of color.
  • Seeking out and addressing the concerns of disabled people of color when they speak of being marginalized inside of the Independent Living movement and specifically in our caucus.
  • Spreading information about racism and the activism of people of color to our network, and pushing for disability advocates to recognize that racism is a disability issue regardless of whether racial justice work is directly confronting ableism.
  • Holding ourselves, Centers for Independent Living, State Independent Living Councils, and all members of NCIL accountable to the ways that we perpetuate racism by actively educating ourselves and each other, and confronting our white peers about their racist actions.

We urge disability activists to fight for social justice by educating ourselves about racism, answering calls for solidarity, developing concrete action plans on how to do more anti-racist work, and seeking out the leadership of disabled people of color. We also urge NCIL membership, Centers for Independent Living, State Independent Living Councils, and the disability community as a whole to address our overwhelming whiteness and challenge racism and anti-Blackness inside of our communities.


The National Council on Independent Living Youth Caucus

Victims of Crime Can Receive Compensation – A Message from the NCIL Violence & Abuse Subcommittee

People with disabilities are eligible from compensation when they are victims of crimes. The Victims of Crime Act (VOCA) of 1984 provides funding to each state to compensate for some of the expenses related to being a victim of a crime.

Since people with disabilities experience violent crime twice as often (National Crime Victimization Survey Report 2013), one might expect states frequently serve victims with disabilities through their victim services programs. However, outreach to the disability community could be better.

Victims with disabilities and advocates need to learn about their state’s compensation programs. The National Association of Crime Victim Compensation Board website lists each state’s crime victim compensation program. Each state has its own budget and eligibility criteria.

One thing is true across the country: people with disabilities have a right to these services. If you, or a family member, has been a victim of a violent crime (including domestic violence, sexual assault, physical injury) you may be able to access compensation for out of pocket expenses like lost work, unpaid medical bills (including counseling), funeral and burial costs. The process can take several months. Contact your local Center for Independent Living (CIL) if you need support in the application process.

Due to a longstanding VOCA funding cap being lifted, state crime victim budgets were increased in FY2015. Some members of Congress are attempting to take away these long-needed increases which were being used to increase participation of victims with disabilities in many states. People can speak out against these new 2016 proposed cuts to victim services with their state senators and representatives.

Wake Up to the Real Danger of the Murphy Bill!

By Daniel Fisher, President, National Coalition for Mental Health Recovery

Wake up, advocates, before it is too late. Representatives Murphy and Johnson’s bill, the Helping Families in Mental Health Crisis Act (H.R. 2646) is a much greater threat than you realize. This bill is a direct attack on the core values of our mental health recovery movement of empowerment and community integration by its emphasis on coercion and institutionalization. It is an attack on all the work we advocates have done over 40 years as far as recovery, deinstitutionalization, and rights for persons labeled with mental illness. Its intent is to extinguish our vision of recovery.

This proposed legislation robs people of hope because it is based on a false belief that people never recover, and must be controlled and maintained in the same psychiatric institutions from which people have gradually been freed. This is not evidence-based legislation. It is a denial of the evidence that when provided voluntary community supports, people recover from even the most severe conditions. Every element of the legislation is disempowering and attacks our values of recovery by: its intent to expand outpatient and inpatient commitment, its loosening of confidentiality, its expansion of payments for institutional care at the expense of community care, its call to dismantle SAMHSA, the agency that has carried out the New Freedom Commission (NFC) for Mental Health’s call for recovery-oriented systems, and its curtailing of the capacity of the Protection and Advocacy organizations’ to promote system change, while providing no new money for mental health services.

Some supporters of the bill are saying we have to rebuild asylums to prevent incarceration in jails and prisons. But we cannot financially, legally, or morally afford to rebuild asylums. The Supreme Court’s Olmstead Decision and the ADA upon which it is based have stated that people should not be institutionalized if they are capable of living in the community. But we need legislation that creatively expands opportunities and funding for voluntary, community-based alternatives to coercive institutions such as:

  • Reforming of Medicaid and Medicare, so they can fund recovery and community integration rather than simply medication & symptom reduction
  • Enabling Medicaid funding of economical peer-run respite care, crisis stabilization, and cooperative apartments rather than nursing homes and hospitals
  • Expanding of housing first programs and new housing subsidies to alleviate the dead end of homelessness.
  • Expanding of cost-effective, consumer-run recovery centers and technical assistance centers to support them
  • Expanding training and hiring of peers into all organizational levels of the system
  • Expanding training and support for persons with lived experience to be meaningfully involved in policy and evaluation
  • Developing promising clinical approaches, such as Open Dialogue, that reduce over dependence on medication
  • Strengthening the P&As so they can ensure that the potential of the Olmstead Decision is fulfilled

The most ominous aspect of this Murphy legislation is its intent to silence the voice of persons with lived experience in the formation of its provisions and in future policy development. The disability world in general and mental health world in particular has had a long history of highlighting the centrality of the voice of consumers in policy formation. This principle is formalized in the regulations concerning the expenditure of Mental Health Block grant funds. In addition, the NFC report concluded that the transformation of the mental health system should be consumer- and family-driven. In contrast, the Murphy bill calls for the new advisory body to the Assistant Secretary of MH and SUD to consist of mainly of clinicians with a lone spot for a person with lived experience, but he/she had to have received mental health services in the last two years.

Rather than further amending this fatally flawed proposed legislation, I recommend it be stopped and the drafting begin anew with the 115th Congress. Congress could use the example of the disability community in its drafting of the ADA. There was true involvement of leaders with disabilities and it was bipartisan. We need to pressure Congress to accept the theme of our movement and every civil rights movement: “Nothing about us without us.” Congress needs to realize that the only truly evidence-based system is one that is based on our voice and experience, because “We are the evidence that people recover.”

Wake up and contact your Congressperson, and let them know that Rep. Tim Murphy’s Bill, HR 2646, is dangerous to recovery and should not progress any further. As Justin Dart said, “Fight as if your life depends upon it because it does.”

Contact info – National Coalition for Mental Health Recovery (NCMHR): 877-246-9058;;

AT&T Feel The Music Campaign

AT&T is inviting the Deaf and Hard of Hearing community to take part in the AT&T Feel The Music campaign. It’s a social project that will allow everyone to celebrate, participate and share in their love of music.

As part of this campaign, AT&T worked with the Deaf Professional Arts Network to build awareness for the community and create an American Sign Language (ASL) video. The video rocks the song ‘Different Colors’ by WALK THE MOON.

Through November 29, experience this by:

  • Visiting the AT&T Feel The Music website at Watch our featured “Different Colors” music video, plus extra behind-the-scenes footage.
  • Entering the Feel The Music contest* by creating and submitting your own unique ASL Different Colors music video. With your submission you’ll enter for a chance to win a trip for two to see the band, WALK THE MOON, at a live musical event.
  • Sharing your ASL music video on your social media channels. Tag @ATT and include #FeelTheMusic to get others to join the fun.  [Read more...]

NCIL Members: Please Participate in the Physical Disability Banking Survey

The World Institute on Disability, the National Council on Independent Living (NCIL), and the Association of Programs for Rural Independent Living (APRIL) are conducting a brief 15 to 20 minute survey about access to and use of banking and financial institutions for people with physical disabilities. Your responses will help guide future efforts to provide improved banking and financial institution products, services and programs to better reach the physical disability community. Thank you for participating!

ACL Seeks Comments on Independent Living Proposed Rule

As we announced last month, the Administration for Community Living (ACL) agreed to issue new sub-regulatory guidance related to state designation provisions in the Workforce Innovation and Opportunity Act (WIOA). This new guidance clarifies that the Designated State Entity’s (DSE) signature on the State Plan for Independent Living (SPIL) indicates their agreement to fulfill the duties as outlined in the plan – not their agreement to the plan’s content.

On Monday, ACL announced that the updated guidance was published in the Federal Register. The Notice of Proposed Rule Making (NPRM) is now open for public comment through the Federal Register. Comments are due by January 15, 2015.

Read ACL’s full announcement for additional information.

The issuance of new guidance would not have been possible without the continued advocacy of NCIL members. Thank you for all of your hard work!

Peer Support – A Proven Volunteer Model

CIL-NET Presents… A Teleconference & Webinar

Get to the Core of It: Best Practices in the Four Core Services

December 10, 2015; 3:00 – 4:30 p.m. Eastern

Register online or by using the printable registration form (PDF).

IL-NET Logo - CIL-NET + SILC-NETPeer support is a hallmark of the Independent Living Movement and a core service – both in statute and philosophy – of Centers for Independent Living. We all know what peer support is, but running an organized, effective peer support program with limited funding and staff must be unique to each CIL’s capacity and need. If you and your staff would like to learn more about implementing a proven volunteer model for peer support, then you won’t want to miss this training.

Our presenters operate the volunteer-based peer support program at Ability360, the Center for Independent Living in Phoenix, Arizona. You’ll learn all aspects of this best-practice peer support program, from planning to implementation and expansion with resource materials so you don’t have to invent the wheel!

Registration Fee: $75.00. Fee is per site (connection) and does not apply per participant; registrants are encouraged to gather as many individuals as desired to participate by telephone or webcast.  [Read more...]