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independent living policy for wonks and wonkettes

Information Alert: DOL Home Care Rule Reinstated

Last week, a three-judge panel of the U.S. Court of Appeals for D.C. upheld the Department of Labor’s (DOL) Home Care Rule (PDF) and reversed the lower court’s January decision to vacate the Rule. As a reminder, in September of 2013, the DOL issued a regulation known as the Home Care Rule that expanded the Fair Labor Standards Act’s (FLSA) minimum wage and overtime requirements to most home- and community-based service workers, who were previously exempt from these requirements. In January of this year – when the Rule was supposed to go into effect – Judge Leon of the U.S. District Court for D.C. vacated the Rule (PDF), stating that the DOL was “trying to do through regulation what must be done through legislation.”

NCIL is extremely supportive of higher wages and benefits for personal care attendants. Unfortunately, that is not what this Rule will accomplish. The reality is that this Rule will result in harmful cuts for both consumers and workers. In several states that have started planning for the Rule’s implementation, we’ve already seen consumers get their service hours cut and workers receive notices of caps on hours and earnings. If this rule moves forward, the result will be widespread service disruptions that will lead to negative health consequences, decreased independence, and increased risk of institutionalization for millions of consumers with disabilities around the country.

Without further action, the Rule will go into effect on October 13, 2015. During this time however, the plaintiffs have the opportunity to file petitions requesting the decision be reheard by the entire D.C. Circuit, or asking the U.S. Supreme Court to review the decision by filing a Petition for Writ of Certiorari. Depending on how the case moves forward, an additional “stay” can also be sought to maintain the status quo until a final decision is made.

It is still important for advocates and consumers to be knowledgeable about this Rule and any actions your state is taking to prepare for its implementation. It is vital that the disability community be involved in these state plans to ensure that they do not cut services, dismantle programs that allow consumers to control our services, or place caps on worker hours and earnings. NCIL will continue to be engaged with this case and will keep you updated on its status as it moves forward.

Disability Stakeholder Organizations Commemorate Hurricane Katrina 10th Anniversary

The National Council on Independent Living (NCIL) and Portlight Strategies (Portlight), national disability stakeholder organizations, today issued the following statement commemorating the 10th Anniversary of Hurricane Katrina:

Portlight Strategies logo“Ten years ago Hurricane Katrina struck the Gulf Coast, taking hundreds of lives, upending thousands of others and ravaging communities. People with disabilities died and were harmed in disproportionate numbers. This week NCIL and Portlight are commemorating all those impacted by Katrina (especially people with disabilities), honoring the resilience of the survivors, acknowledging the failures which exacerbated the human toll, and recognizing important steps made in the last ten years to ensure that people with disabilities are better served in future disasters and are intimately involved in the planning and execution of those efforts.”

“NCIL and Portlight have both worked over the last ten years to identify institutional and systemic failures which led to the deaths, displacement and anguish of people with disabilities resulting from Hurricane Katrina. We have worked TOGETHER, in a spirit of community, to create and nurture effective solutions, encourage emergency management institutions and organizations to take our issues seriously, and to build meaningful relationships between people with disabilities and our stakeholder organizations and those whose jobs it is to serve us in disaster situations.”

In the last ten years, a number of initiatives have been instituted by NCIL and Portlight as the result of lessons learned from the Katrina experience. These efforts are bearing tangible positive fruit for people with disabilities and include:

  • Establishment of the NCIL Emergency Preparedness Subcommittee – This subcommittee meets monthly to compare notes, share best practices, review problematic issues and strategize advocacy and solutions.
  • Portlight has created a deployable shelter accessibility module that contains a wide variety of tools and equipment is made available to shelter operators to help ensure safe and accessible shelters
  • NCIL / American Red Cross Memorandum of Understanding
  • Portlight / American Red Cross Memorandum of Understanding
  • NCIL / Portlight Memorandum of Understanding
  • NCIL / FEMA Memorandum of Agreement
  • Portlight / FEMA Memorandum of Agreement

These Memoranda have created a solid foundation of respect and cooperation between disability community stakeholder organizations and emergency management organizations upon which is being built a solid infrastructure of solutions. These agreements are the crucial manifestation of the critical importance of community building and relationship building in addressing and solving issues involving people with disabilities.  [Read more...]

An Update from the NCIL Housing Subcommittee: Representative Schakowsky Introduces the Inclusive Home Design Act!

On July 28, 2015, during the Rally at the Capitol during NCIL’s 2015 Annual Conference on Independent Living, Illinois Representative Jan Schakowsky announced that she would be introducing the Eleanor Smith Inclusive Home Design Act that very day. The Inclusive Home Design Act is a bill that would have federally funded single-family homes incorporate Visitability.

equal housing opportunity symbolIf you are not familiar with the concept of Visitability, it is the idea, pioneered by Eleanor Smith of Concrete Change in Atlanta, that people with disabilities should be able to visit their neighbors, families, and friends. It has minimum requirements for single-family homes that, as colorfully described by someone, would allow a guest to “get in and pee”. The zero-step entrance and wide interior doors also provide the basics for a person with a disability to reside in, not just visit, a home.

The bill uses the new voluntary Visitability standard in the International Codes Commission/American National Standards Institute 117.1 1005 Type C unit. This would require at least one accessible entrance, an accessible interior circulation path, and a usable bathroom. It also would require a usable food prep area, and accessible lighting controls and outlets. This bill has been called the “federal Visitability bill.”

Representative Schakowsky followed through on her announcement, the bill was introduced in the House as H.R. 3260, and it currently has five co-sponsors: Representatives Clay (MO), Ellision (MN), Moore (WI), Holmes (DC), and Rangel (NY). It was referred to the House Committee on Financial Services, which is chaired by Rep. Hensarling (TX).

There is no Senate version at this time, although last year Senator Harkin introduced the Universal Home Design Act which would require Universal Design features in federally funded single family homes and townhomes.

New Mobility Magazine has a nice interview with Eleanor Smith about the Inclusive Home Design Act.

The NCIL Housing Subcommittee, along with other organizations such as ADAPT, will be advocating for H.R. 3260. We are asking you to reach out to your Representative to sign on to support this bill. Please provide feedback to Brian Peters at

Example CIL Environmental Policy & Procedure from Arizona Bridge to Independent Living

Source: Arizona Bridge to Independent Living (ABIL)

ABIL LogoABIL recently updated our policy and procedure for accommodating individuals with Environmental Sensitivities with the help of national experts on the topic and we wanted to share it with other CILs. It isn’t perfect. It is one example of what one CIL has done. We realize this is a difficult topic to address because everyone is different and because our environments are contaminated with a barrage of manmade chemicals and Y-FY/radio waves that are difficult to avoid. Still, it is our responsibility and desire to have our programs and facilities as accessible as possible for our employees and the consumers we serve who experience environmental illness.

We are also including a link to our Suggestions for Transition to a Fragrance-Free Life tip sheet, which we share with new employees during their initial orientation process. The NCIL Environmental Barriers Task Force created NCIL’s Environmental Health Barriers Toolkit, which can be found in the “Resources for Advocates” area of the NCIL website.

Rethinking Disability: A Policy Proposal for Our Time

Source: Justin Harford, NCIL Employment Subcommittee Co-Chair and Author of Blind Yanqui Reflections

CareerACCESS logo - Career ACESSAt the Annual Meeting of the National Council on Independent Living in July 2014, a delegation of approximately 700 individuals with disabilities passed a resolution urging NCIL to push for a redefinition of disability as it relates to the Social Security Act. Since 1982, NCIL, a cross-disability organization that is populated by those whom it represents, has been one of the most significant voices of the disability community in Washington DC, advocating a variety of issues from public transit, to employment. Interest in redefining Social Security’s definition of disability over the last year with organizations like National Council on Disability and the World Institute on Disability has grown. That little section in chapter II of title 42 of the US code has had all sorts of far-reaching effects in the world of employment for people with disabilities since 1956, and we must update it.

As it is, disability is defined as a medically determinable physical or mental impairment, expected to last longer than 12 months or to result in death, and which prevents the individual from doing work of any kind. There is no possibility of partial disablement – you are either completely and totally disabled, or not. The first question that adjudicators ask is whether or not you are working, and your very character as someone who is employed is enough to disqualify you immediately.

Mundane as it may sound, the way that the Social Security Administration delineates between who is and isn’t disabled not only impacts whether or not someone can get on cash benefits, but a variety of other important matters as well. It also factors and eligibility for Medicaid, a federal program that offers personal and health care services to people with disabilities and people on limited incomes. Personal assistance services are what enable individuals with disabilities to take care of activities of daily living including bathing, grooming, eating and getting out of bed among other things. A personal attendant might cost anywhere between $20,000 and $30,000 per year. Medicaid is not only the only way for someone to get these kinds of services, it is also the only resource for covering expensive medical costs such as catheters, which can go for $1500 per month, and which are not covered by private insurance.  [Read more...]

Secrets to Creating Boards that Make Cash Gifts: Your Ingenious Nonprofit

August 2015

Karen Eber Davis

Logo - Karen Eber Davis ConsultingYou might believe that asking board members to give a cash gift to your organization is too much. After all, your members do so much for you. They promote you. They give oodles of time. They willingly offer expertise. Asking board members, who do so much, to also give a cash gift is too much right?

Unfortunately, this belief might hurt your organization. Most nonprofits need the cash. They need the donors, who will give, if the board gives. And, your board’s decisions may be impacted. People decide differently when their money is involved.

Let’s look at what’s also happening here. You and your board designed a system that benefits you both. You don’t have to ask them for money, feel guilty about asking for it, or risk irritating them. Your board gets to keep their cash.

Your board already has a standard about giving money. To help your nonprofit, make it your goal to replace the existing standard about optional giving with one where every board member makes a yearly cash gift. This article shares several tools that ingenious nonprofits leaders, like you, can use to create this standard.  [Read more...]

Action Alert: Sign on to a Statement of Solidarity in Observance of Suicide Prevention Month

September is Suicide Prevention Month, and this week’s WAM featured a Statement of Solidarity from Not Dead Yet that NCIL has signed on to. We hope that CILs will sign on individually as well, so that we can generate a large list of those who stand in solidarity with the values of suicide prevention.

Not Dead Yet LogoThe disability, aging, and military and veteran communities are at increased risk of suicide; members of these communities are more likely to end their lives and to experience pressure to do so. People with disabilities frequently receive messages that we are burdens on those we love, and that our lives are not worth living. On top of that, people with disabilities often lack access to necessary services and supports that make community participation and integration possible. Without significant changes to the discriminatory and exclusionary practices and policies that people with disabilities still face, the alarming suicide rates in our community will not likely change. This is not acceptable.

In an effort to highlight this reality, Not Dead Yet has written a Statement of Solidarity in Observance of Suicide Prevention Month that affirms the values of dignity, diversity, and full participation. The statement also shines a light on the shameful deficits in our current healthcare and long-term services systems that so many in our community rely on.

We encourage you to review the Statement and consider signing on your Center. Please also consider sending this out to your networks. To sign on, send an email to noting your organization’s name as you’d like it to appear and the state in which you are located. Please send your sign-on as quickly as possible, but NDY will be receiving sign-ons until close of business, September 25, 2015.

Process for SPIL Formulation Under WIOA

CIL-NET & SILC-NET Present… A National Teleconference & Webinar

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

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

How will WIOA affect your SPIL development? If you aren’t sure, you’ll want to join us in September for the latest on the relevant pieces of WIOA and proven strategies for developing a logical, organized SPIL. The State Plan for Independent Living is a critical piece of the SILC’s duties. But the SILC simply cannot develop the SPIL alone. Our presenters will share their processes for developing timelines, gaining input, and identifying priorities to create a strong, effective SPIL.

This training isn’t just for SILCs. Given the new enhanced role of CILs in the SPIL process and the nature of the topic, CILs are encouraged to participate as well!

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...]

Adult Protective Services: Allies not Adversaries

By Jan Derry, Co-Chair of Violence and Abuse Subcommittee

At NCIL’s Annual Meeting on July 29, 2015, the NCIL membership voted to adopt the resolution that was submitted by the Violence and Abuse Subcommittee. This resolution recognized that violence and abuse against individuals with disabilities occurs at a much higher rate than for individuals without disabilities. It also recognized that Adult Protective Services, APS, is often the first responder to reports of abuse, neglect and exploitation and that the current structure of APS creates inconsistencies on types of abuse responded to, the population it protects, who is required to report, and the types of response varies from state to state. These inconsistencies can put the victim in further danger and it can result in the victim being re-victimized by the service system charged with protecting them.

The resolution calls for a national model of APS that will eliminate confusion, fear and mistrust; that will embrace a trauma informed response to abuse to serve victims with respect and compassion.

In October of 2014, the Administration on Community Living created the Office of Elder Justice and Adult Protective Services, becoming the first Federal “home” for APS. Consistent with the resolution adopted by the membership, NCIL began its collaboration with ACL to address concerns regarding the historical experiences of people with disabilities as they interact with APS.

On August 5th, Kelly Buckland, NCIL’s Executive Director and Jan Derry, Co-Chair of NCIL’s Violence and Abuse Subcommittee, joined a round table discussion held at ACL to learn of ACL’s current investments in APS in to building a National APS Resource Center, to learn about the proposed Voluntary Consensus Guidelines for state APS systems, the 10 state grants to enhance APS, and to join with other disability leaders to share what we know about the strengths and weaknesses of the current systems.

From July 13-October 30, 2015, ACL is launching a stakeholder engagement and outreach strategy to refine and finalize the draft “Voluntary Consensus Guidelines for State APS Systems”. The goals of the Guidelines are to provide a core set of principles and common expectations to encourage consistency in the policies and practices across the county; to help ensure that adults are afforded similar protections and services delivery, regardless of which state they are in; and to enhance effective, efficient and culturally competent delivery both of services to the victim and responses to perpetrators. These will be voluntary guidelines and not standards nor regulations.

Now ACL needs to hear from you!

ACL is hosting a number of virtual listening sessions via conference calls. ACL will host both open sessions and targeted professional stakeholder sessions. See the attached information for how to join the listening sessions. Each session is limited to 75 callers, thus registration is required. You may also view and provide comments on the draft guidelines electronically.

Example comments:

  • The caseload of APS workers should be reasonable so they can move at a reasonable pace.
  • We must ensure that all APS staff members are trained in cultural competency in working with people with disabilities, including communication, general awareness training, disability-specific, providing reasonable accommodations, assistive technology, barriers to reporting and unintended consequences, trauma-based interviewing, consumer directed service delivery systems, etc.
  • APS should use people with disabilities who are active in the disability community as the experts in the field.
  • The position of APS should be elevated within the Department of Health and Human Services (HHS) to the same level and pay as Child Protective Services (CPS).
  • Please standardize definitions of who should receive the protections and services provided by APS regardless of state or jurisdiction they are in.
  • APS should be able to provide consistent timelines for investigations.
  • Please define the scope of authority of guardianship.
  • Data should be maintained regarding the prevalence of investigations and outcomes specific to people with disabilities.

Lets’ make sure our voices are heard! If we don’t comment, then we can’t complain about what the final guidelines end up being. NOTHING ABOUT US WITHOUT US!

New Survey of User Needs for Wireless Technology Just Launched – Please Participate!

The Wireless RERC’s research team is pleased to announce the launch of the 2015 Survey of User Needs (SUN) for Wireless Technologies. The SUN is our cornerstone survey of wireless technology use and usability by people with all types of disabilities. The survey mainly focuses on cellphones, but also includes questions about other types of devices like tablet computers such as an Apple iPad, Amazon Kindle Fire, Microsoft Surface, Samsung Galaxy Tab and other similar devices.

First launched in 2002, the SUN is the only national source of comprehensive information and insight into the wireless technology needs of people with disabilities. SUN data are used by the wireless industry, regulatory agencies, advocacy organizations and other researchers to inform their work. Over the years, more than 6000 people with disabilities have completed the SUN, and more than half have joined our national Consumer Advisory Network (CAN).

Please consider participating in the Survey of User Needs. You can participate on the web, on the phone, or we can send you a paper copy with a postage paid return envelope.

To complete the survey over the phone or to request a paper copy with a stamped return envelope, please contact John Morris at: or 404-367-1348.