Disasters, both natural and manmade, can strike anywhere at any time. Individuals with disabilities are disproportionately affected by disaster. Centers for Independent Living, Statewide Independent Living Councils, and Independent Living Associations are often uniquely qualified to provide an array of services to individuals with disabilities in preparation before, as well as during and after, disaster in their local area. While your area may not have been impacted by a disaster, climate change makes the possibility increasingly likely.

The National Council on Independent Living Emergency Planning and Response Subcommittee is composed of NCIL members who take a great interest in the issue of individuals with disabilities affected by disaster. Many of the members are actively involved in disaster planning and response within the disability community, and have provided disaster relief to individuals with disabilities for a number of years. Most of us became interested following a disaster that directly impacted our areas and consumers we served. We offer the following examples of how CILs, SILCs, and ILAs throughout the country have become involved with their local emergency management and affected systems change to ensure that individuals with disabilities are provided an equal level of service in disaster preparedness, response, and recovery.

Following these examples, is suggested language that could be included in State Plans for Independent Living to ensure that the state Independent Living programs can and will be allowed to provide emergency services, if necessary, in their local areas. We understand that many CILs, SILCs and ILAs may not have the capacity, funding, or staffing to provide direct disaster relief to their communities. However, with involvement in mitigation and preparedness activities, our community can perhaps be better prepared and less impacted. We believe that this involvement is easily considered under the core service of advocacy and the community service of systems advocacy. Assistance offered to individual consumers during and after a specific disaster can be easily included in and counted as one or more of the five core services of independent living.  [Read more…]

Source: ASAN

In December of 2015, 71-year-old Antonio Tucci was beaten to death by his nephew. A month earlier, 5-year old Helious Griffith and 6-year old Dustin Hicks were both murdered by their mothers.

In the year since our last vigil, our community has lost at least seventy more victims.

In the past five years, over one hundred and eighty people with disabilities have been murdered by their parents.

Tuesday, March 1st, the disability community will gather across the nation to remember disabled victims of filicide–disabled people murdered by their family members or caregivers.

We see the same pattern repeating over and over again. A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the “burden” of having a disabled person in the family. If the parent stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten. And then the cycle repeats.

But it doesn’t have to.

Here’s what you can do in your own community to help spread awareness of these tragedies – and help stop more from happening.

1. Read and share the Anti-Filicide Toolkit

This toolkit is intended to provide advocates and allies with concrete tools and resources to use in their own communities, including in response to local incidents. The toolkit includes information about how to understand and respond to filicide, frequently asked questions about filicide, and a guidebook for Day of Mourning vigil site coordinators.

2. Sign up to be a Day of Mourning vigil site coordinator

For the last five years, ASAN, ADAPT, AAPD, Not Dead Yet, the National Council on Independent Living, the Disability Rights Education & Defense Fund, and other disability rights organizations have come together to mourn the lives lost to filicide, bring awareness to these tragedies, and demand justice and equal protection under the law for all people with disabilities.

On Tuesday, March 1, 2016, ASAN, NCIL, and the wider disability community will be holding vigils to mourn the lives of those we’ve lost and bringing awareness to this horrific trend of violence against our community. NCIL encourages Centers for Independent Living nationwide to participate in this important effort.

The National Council on Independent Living (NCIL) would like to express our serious concern with some of the actions in President Obama’s recent proposal to reduce gun violence. We are incredibly dismayed and alarmed by the false implication that individuals with mental illness are a significant source of the country’s gun violence problem. This goes against decades of research that shows that people with psychiatric diagnoses are no more likely to be violent than people without, and are in fact much more likely to be victims of violence. The rhetoric being used is dangerous and discriminatory, and it only furthers the stigma that our community already faces.

Specifically, NCIL opposes the effort to include individuals with mental illness who have representative payees to manage their Social Security benefits in the gun background check database. Not only are people diagnosed with mental illness no more likely to be violent than those without a mental health diagnosis, but there is also no evidence that having a representative payee has any connection to violence. Therefore, taking this step would have no impact on gun violence in this country. Since the action does not require the Social Security Administration (SSA) to report these individuals, we urge SSA to consider conforming to this measure thoughtfully.

While NCIL is encouraged to see the President propose $500 million to increase access to mental health care, the presence of such an initiative in a gun control proposal serves to further reinforce the false connection between mental health and gun violence. Continuing to single out people with mental illness – referred to in the President’s recent remarks as the “few mentally unstable people who inflict harm on others” – takes attention away from the significantly more pressing issues facing our community today. If Congress does choose to support President Obama’s $500 million proposal, NCIL urges that it be used towards increasing access to services and supports that will improve true community integration. Support systems for people with psychiatric disabilities are fractured at best, and the focus must be on expanding community-based, consumer-directed services.

NCIL supports the President’s overall efforts to deal with the gun violence crisis in our country. However, NCIL opposes any legislation or administrative action that continues or strengthens denial of rights based solely on a diagnosis or disability and any deprivation of liberty based on disability rather than criminal activity. We hope that in the future, the President and his Administration will address this issue in a manner that is in line with their previous commitment to people with disabilities.

NCIL’s Mental Health Civil Rights Subcommittee continues our work to vigorously oppose dangerous federal legislation related to mental health. Over the past few months, NCIL has submitted letters to members of Congress, sent Action Alerts, and published WAM updates similar to this one.

On June 4, 2015, Representative Murphy introduced H.R. 2646, the Helping Families in Mental Health Crisis Act. In August, a separate mental health bill (the Mental Health Reform Act – S. 1945) was introduced in the Senate. Provisions in the current House and Senate bills threaten the structure of the Substance Abuse and Mental Health Services Administration (SAMHSA), threaten privacy rights, weaken the ability of the Protection and Advocacy System (P&As) to do their vital work defending civil and human rights, and increase the use of forced treatment in the community through supporting assisted outpatient treatment (AOT), among other concerns. NCIL Mental Health Subcommittee Co-Chair Mike Bachhuber was quoted in a USA Today article raising concerns about the actual effect the above-mentioned House bill could have on the privacy rights of people labeled with psychiatric disabilities.

As outlined in the past several editions of NCIL’s Legislative & Advocacy Priorities, NCIL supports reforms of SAMHSA that would increase consumer involvement in mental health policy, which neither bill would accomplish.

And, in the aftermath of yet more tragic mass-shootings, legislation restricting the right to own firearms solely based on a diagnosis of a mental health or intellectual disability (not on prior conviction of a violent crime) has been introduced in some states, including recently in Illinois. This bill, and other bills similar to it, set dangerous precedence that having a disability automatically deprives someone of a constitutional right – something that the disability community must strongly fight against.

As we’ve written previously, NCIL opposes any legislation or administrative action that continues or strengthens denial of rights based solely on a diagnosis or disability and any deprivation of liberty based on disability rather than criminal activity.

NCIL’s Mental Health Civil Rights Subcommittee meets monthly via teleconference and also maintains an active page on Facebook. Please contact us through NCIL’s website or via Facebook if you are interested in helping with our work.

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.

This 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:

• Energy and Commerce,
• Education and the Workforce, and
• Ways and Means Committees.

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.

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

Republicans:

• 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)

Democrats:

• 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!