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independent living policy for wonks and wonkettes

Information Alert: DOJ and OCR Release Joint Letter on FLSA Rule and Olmstead

The U.S. Department of Justice’s Civil Rights Division (DOJ) and the U.S. Department of Health and Human Services’ Office for Civil Rights (OCR) released a joint letter this week on the Department of Labor’s Fair Labor Standards Act (FLSA) rule implementation. The letter addresses states’ Olmstead obligations in relation to the new FLSA Home Care Rule regarding minimum wage and overtime protections for home care workers.

The DOJ / OCR letter states that while ensuring protections for home care workers is a priority, it should not be done at the expense of people with disabilities. The DOJ and OCR recognize that changing or limiting services can increase the risk of institutionalization or segregation for individuals with disabilities, and their letter stresses that the implementation of the Home Care Rule must comply with Title II of the ADA and the Olmstead decision.

As you know, some states are planning to comply with the Home Care Rule by setting limits or capping direct care workers’ hours or travel time. This letter emphasizes that across-the-board caps risk violating the ADA. The DOJ and OCR urge states to consider making modifications, including exceptions to these limits and caps when appropriate, to avoid placing individuals who receive services at an increased risk of institutionalization or segregation. It also encourages states to implement processes for individuals with disabilities to obtain these exceptions “reliably and expeditiously”, and to collect and monitor data to ensure that service changes and disruptions do not place individuals with disabilities at a serious risk.

This letter shows a commitment by the DOJ and OCR to minimizing the impact of the Home Care Rule on consumers who use home care and personal attendant services. It is now up to all of us to continue advocating on a state level to ensure that states follow the guidance provided in this letter when planning for FLSA compliance. The Home Care Rule must not be enacted at our expense. This commitment from the DOJ and OCR is a step in the right direction, and it provides a tool for advocates to use at the state level.

Confronting Our Fear: Disability Profiling and the Second Amendment – An Update from the NCIL Mental Health Civil Rights Task Force

People simply labeled with mental health disabilities can be (and routinely are) deprived of our civil rights based solely on such a label.

Often such labels are assigned based on the briefest of evaluation (or none at all) with professionals working in the mental health system. Once assigned, such labels often mean the swift and total inability to make the most basic decisions about housing, finances, health care, parental issues, and the right to own and use firearms. On the supposed face of it, that last exclusion may seem to make sense — who wants people who the majority of society fears may be violent to have firearms? This belief, however, is based in fear and prejudice leading to discrimination in the form of an automatic deprivation of one of the most deeply held rights in this country. We aren’t talking about people who have been convicted of a violent crime — we are referring to people who, based solely on a label of a psychiatric disability, are summarily excluded from a civil right guaranteed to almost everyone else. There are numerous studies showing that people labeled with psychiatric disabilities are no more likely to be violent than anyone else — actually, we are more apt to be the victims of violence. We are too often seen as patients first and people — people with civil and human rights second. This understanding isn’t (and would never be) tolerated for any other part of the disability community — essentially, it amounts to absolutely nothing less than outright disability profiling.

Current federal laws (as well as laws in most states) prohibit people who have ever been committed (including outpatient commitment) or who are subject to guardianship from purchasing guns and ammunition. The inability to own a firearm excludes us from being able to go hunting with our families (for sport or subsistence), defend our households if confronted with a home invasion, or hold jobs where there’s a responsibility to defend fellow employees or our employer’s property. Being unable to own a firearm can pose more of a problem for people who live in isolated or otherwise unprotected areas of the country.

More than owning firearms, however, accepting this line of thinking sets a dangerous precedent that one group of people can be unilaterally deprived of their civil and human rights based on unfounded fear. As the next U.S. Congress prepares to be inaugurated and convene, we have to work together to be sure that this doesn’t happen. This will take not only persistent legislative advocacy but education. Even within CILs, the above fear-based views are all too common.

ABLE Act Becomes Law, with Exceptions

The Senate has passed the Achieving a Better Life Experience (ABLE) Act of 2014 and it is now headed to the President’s desk. NCIL has supported the ABLE Act since it was first introduced in 2006. The ABLE Act was designed to allow individuals and families to save funds in an ABLE Account to better support our health and well-being, our employment, our independent living, and our self-sufficiency over time. The ABLE Act amends Section 529 of the Internal Revenue Code to make these accounts possible. Originally, ABLE Accounts were to be open to anyone applying for or participating in the Supplemental Security Income program (SSI).

Unfortunately, the ABLE Act, as passed, only applies to people who acquire a disability before age 26. People who acquire a disability after that age will not be helped by the bill at all. NCIL is disappointed that Congress chose to gut this long-standing priority of the disability community. However, NCIL members may find the following information helpful in understanding the new law.

Research shows that living with a long-term disability means having routine, higher, out of pocket costs. The ABLE Act allows families that include someone with a disability under the age of 26 to be able to save and pay for these needs.

The National Disability Institute (NDI) has created a list of 10 items about ABLE accounts that individuals with disabilities and their families should know:

1. What is an ABLE account?

ABLE Accounts, which are tax-advantaged savings accounts for individuals with disabilities and their families, will be created as a result of the passage of the ABLE Act of 2014. Income earned by the accounts would not be taxed. Contributions to the account made by any person (the account beneficiary, family and friends) would not be tax deductible.

2. Why the need for ABLE accounts?

Millions of individuals with disabilities and their families depend on a wide variety of public benefits for income, health care and food and housing assistance. Eligibility for these public benefits (SSI, SNAP, Medicaid) require meeting a means or resource test that limits eligibility to individuals to report more than $2,000 in cash savings, retirement funds and other items of significant value. To remain eligible for these public benefits, an individual must remain poor. For the first time in public policy, the ABLE Act recognizes the extra and significant costs of living with a disability. These include costs, related to raising a child with significant disabilities or a working age adult with disabilities, for accessible housing and transportation, personal assistance services, assistive technology and health care not covered by insurance, Medicaid or Medicare.  [Read more...]

Patient-Centered Outcomes Research Institute Seeks Nominations to Advisory Panels

Today, the Patient-Centered Outcomes Research Institute (PCORI) announced that it is accepting nominations for its Advisory Panels for terms beginning in 2015. Specifically, it is seeking nominations to fill:

The Panels are seeking patients, clinicians, researchers, industry representatives, and payers to advise PCORI on the issues listed above. Terms are three years except for on the Rare Diseases panel where they are one to two years. Panelists are expected to follow the PCORI’s Conflict of Interest Policy and to attend two to four in-person meetings in Washington, D.C. and additional meetings remotely. Applications are due February 6, 2015.

Organizer’s Forum: Ferguson, Black Lives Matter, Racism, and Disability Communities

Tuesday, December 16, 1:00 – 2:00 p.m. Eastern

  • Call-in: 1-860-970-0300
  • Passcode: 193134#


  • India Harville, a teacher, artist, educator, and activist, working in racial justice and disability justice
  • A speaker from Showing Up for Racial Justice, a network of white anti-racist ally groups
  • Anita Cameron, activist in ADAPT and Not Dead yet, blogger at AngryBlackWomyn

It will be challenging to get into these topics in an hour, but we’d like to take the opportunity of this call to educate ourselves a little on what’s going on around the country and what can we all do to fight racism. Please join us to hear from insightful speakers and think about what’s next.  [Read more...]

NCIL Mourns the Passing of Ki’tay Davidson

On December 2nd, Ki’tay Davidson passed away in his sleep in Los Angeles, CA. The fact that so many of you knew Ki’tay is a testament to the leadership, outreach, and love he showed to the movement. For those of you that did not, Ki’tay was a young, African-American, transgender man with a disability who was out and proud. He worked across movements to connect the disability rights movement with the LGBTQA communities, people of color, young people, and more. Ki’tay recognized that, like himself, many individuals are members of multiple communities and that we must work together to be inclusive and make change. Just 22 years old, Ki’tay had already made himself indispensable to our movement.

Ki'tay D. Davidson smiles for the camera on a sunny beachKi’tay created #DisabilitySolidarity and the @dissolidarity twitter account in the wake of Michael Brown’s killing in Ferguson, MO. Through @dissolidarity, his presence across social media, and tireless work, Ki’tay was instrumental in creating conversation around the intersection between disability and people of color. He worked on these issues with so much passion and confidence because he knew there was no other way. He knew that people with disabilities who are also people or color and / or LGBTQA, and / or other multiply-marginalized communities are much more likely to face violence in their lives, including at the hands of law enforcement. He reminded us that these vast, festering problems are disability rights issues.

In his honor, we pledge to be a part of these conversations and support the work of all disability advocates. If you would like to show your respect for Ki’tay, please visit the For the Love of Ki’tay D. Davidson GiveForward page and consider donating to support his family by contributing to his memorial services. Please also visit @dissolidarity on Twitter, check out #DisabilitySolidarity, and be a part of the conversation. Ki’tay had begun a lifetime of tremendous work. We must all be a part of it and do our piece if we are to achieve his vision that #LoveWins.

Nothing About Us without Us: NJ Senate Deliberately Excludes Disability Community from Debate on Assisted Suicide Bill

Earlier this week, the New Jersey Senate Health, Human Services and Senior Citizens Committee held a hearing on the state’s proposed assisted suicide bill (S382). Even though the disability community submitted a formal request for inclusion in the hearing, our request was rejected and nobody from the disability community was invited to serve as a witness.

NCIL is extremely alarmed by this deliberate exclusion of people with disabilities, and we stand with every other major disability rights organization in strongly opposing assisted suicide legislation. The disability rights community has been a vocal opponent of New Jersey’s assisted suicide bill, with disability groups – including CILs and the NJ SILC – comprising over half of the organizations who oppose the bill. And the reason for this is clear: people with disabilities are particularly vulnerable to abuse under these laws.

Assisted suicide laws don’t benefit anyone – rather, they reinforce stereotypes about whose lives are worth living. We need to continue to remind legislators to stop devaluing the lives of people with disabilities – equal rights include equal suicide prevention and access to support, not laws that make it easier to end our lives!

The Committee in NJ was not willing to hear our concerns, but we cannot afford to be dismissed from these conversations. Nothing about us without us!

Information Alert: An Update on IL Funding in Appropriations

Last night, the House approved the $1.1 trillion omnibus appropriations bill with a vote of 219-206. They also approved a 2-day stopgap measure to keep the government running through Sunday as the Senate considers the spending bill. The Senate may spend the next several days debating, but they will likely vote by Monday. While the bill’s fate in the Senate isn’t certain, it is expected to pass.

The FY15 funding bill keeps the Independent Living Program at level funding, which as we all know, is just not enough. The Independent Living Program is vital, ensuring the rights of people with disabilities and saving the federal government millions of dollar a year.

This is something we need to make sure our elected officials understand when they consider funding for FY16 and beyond. NCIL has pushed Congress and the Administration to invest an additional $200 million dollars in the Independent Living program, and we will continue to do so in the next fiscal year. This next Congress will need to hear from you, too, to understand how important the IL Program is to their constituents around the country.

NCIL Emergency Preparedness Subcommittee Presents A New Document: Building Relationships with Local Emergency Management

The following document, entitled “Building Relationships with Local Emergency Management”, has been created by the Emergency Preparedness Subcommittee of the National Council on Independent Living. Our purpose with this document is to provide you with a guideline for ensuring that people with disabilities are provided with appropriate and accessible services before, during and after a disaster.

Our country has experienced devastating disasters in recent years. Hurricanes Katrina, Rita and Ivan killed hundreds of individuals in Louisiana, Mississippi and Texas, the majority of whom were people with disabilities. Thousands of individuals with disabilities who were forced to evacuate have never returned. Many ended up in institutional settings. Super Storm Sandy devastated New Jersey and New York. Again people perished because they were not adequately served with disaster response and relief. In 2014 we have experienced destructive tornados, wild fires, flooding, and blizzards. Even after years of hard work in building relationships, we still dealt with inaccessible and inadequate services.

We must aggressively address the inadequacies of the emergency preparedness and response system in this country. The Emergency Preparedness Subcommittee is doing just that, but we need your help. We have developed good, working relationships with federal agencies tasked with providing disaster relief and response. NCIL has Memorandums of Understanding with the Federal Emergency Management Agency, the American Red Cross, and Portlight Strategies. We are working closely with them to develop better systems of service. Finally, the disability community is well represented on several national committees and task forces and our voices are being heard.

However, disaster relief is as much of a local issue as it is a national issue. FEMA cannot deploy to a disaster site until and unless they are asked to respond by state and local emergency managers. The American Red Cross relies on their state and regional managers to respond and deploy as needed. This is where we need your assistance. In order to ensure that people with disabilities are being adequately served, we must be involved on a local level. The best and most effective way for that to happen is for you, your CIL and/or SILC to develop relationships with the emergency response entities in your state, city, county or parish. Active involvement in task forces, at meetings, trainings and conferences is imperative.  [Read more...]

Remember to Register for SILC Congress!

The deadline for early registration is on December 15, 2014 for SILC Congress. If you haven’t had a chance to register, please do so, and please pass this on to anyone who may be interested. The planning committee looks forward to seeing everyone in San Diego in January. 

The website to register and for information is: