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independent living policy for wonks and wonkettes

Participate in the Day of Action for Real Change in Mental Health Policy on October 7!

Source: Campaign for Real Change in Mental Health Policy

On Wednesday, October 7, 2015 the Campaign for Real Change in Mental Health Policy is encouraging everyone to call, write, or use social media to contact their member of Congress and tell them that the Murphy Bill is bad for America.

Resources to advocate successfully are available at the link above.

Twitter Campaign: Tell The National Journal “Nothing About Us, Without Us!”

Also on October 7, from 8:30 – 10:30 AM Eastern Time, The National Journal and Janssen Pharmaceuticals are sponsoring an event in Washington, DC on mental health reform with speakers including Representative Tim Murphy (R-PA), Senator Chris Murphy (D-CT), and a variety of others. The sole voice missing from the discussion is that of those who would be most directly affected by the proposed policies – people with psychiatric disabilities!

The National Journal is encouraging people to use the hashtag #NJMentalHealth during the event. We encourage you to use your voice and your Twitter account to deliver the message that will be missing from the event. You can also use the hashtag #RealMHChange throughout the day. See sample Tweets.

Other ways to get involved:

Not Dead Yet, NCIL, and Four Other National Disability Groups File Friend of the Court Brief in New Mexico Supreme Court in Assisted Suicide Case

Source: Not Dead Yet / PRweb

On September 30, 2015, Not Dead Yet and five other national disability rights organizations filed a friend-of-the-court in the New Mexico Supreme Court in support of the State Attorney General’s request that the state’s high court uphold a Court of Appeals ruling that physician assisted suicide is not a right under the state constitution. Joining in the Not Dead Yet brief are ADAPT, Autistic Self Advocacy Network, the Disability Rights Education & Defense Fund, the National Council on Independent Living and United Spinal, collectively referred to as the “Disability Amici.”

NCIL logo - National Council on Independent LivingOn September 30, 2015, Not Dead Yet and five other national disability rights organizations filed a friend-of-the-court in the New Mexico Supreme Court in support of the State Attorney General’s request that the state’s high court uphold a Court of Appeals ruling that physician assisted suicide is not a right under the state constitution. Joining in the Not Dead Yet brief are ADAPT, Autistic Self Advocacy Network, the Disability Rights Education & Defense Fund, the National Council on Independent Living and United Spinal, collectively referred to as the “Disability Amici.”

The case is Morris v. Brandenburg (S. Ct. No. 35,478) and the disability brief supports the Court of Appeals ruling, which was issued August 11, 2015 (Court of Appeals Case No. 33,630), and the State Attorney General, who is seeking to uphold the appellate ruling.

According to the brief filed in the New Mexico Supreme Court, “State-sanctioned assisted suicide degrades the value and worth of people with disabilities and violates the antidiscrimination rights, protections and mandates of the Americans with Disabilities Act, 42 U.S.C. § 12101, et seq.”

“Our basic position is that when some people get suicide prevention while other people get suicide assistance, and the difference is the person’s age, disability or health status, that’s a problem,” said Not Dead Yet’s president and CEO, Diane Coleman.

The dissent in the Court of Appeals decision that is the subject of the appeal to the state Supreme Court noted that the State Attorney General did not call witnesses or submit evidence of alleged any abuses in Oregon and Washington state where assisted suicide is legal. In their Supreme Court brief, the Disability Amici urge that, if the Court is not prepared to simply uphold the Court of Appeals at this stage, the Court should remand the case and allow one or more of the disability groups to assist the Attorney General or intervene as defendants in the case to ensure a full hearing of facts that were allegedly omitted in the original trial court.

Action Alert: CILs & SILCs – Share Your Experiences with ACL’s Guidance on DSEs

This summer, the Administration for Community Living (ACL) issued sub-regulatory guidance related to state designations. The issued guidance took power away from SILCs and CILs by giving the Designated State Entity (DSE) power to approve what is included in the SPIL. According to the law, the DSE’s signature on the SPIL should be required to indicate their agreement to fulfill their duties – not their agreement with the content of the plan.

NCIL and APRIL leadership will be meeting with Kathy Greenlee, Administrator of ACL, next week to discuss our concerns regarding implementation of WIOA and its impact on SILCs and the development of state plans. We are asking that you take a few moments to share your experiences with us by completing our survey, so that we can report those back to Administrator Greenlee. The experiences you’ve had in your state will help us to identify the most important areas of concern to discuss at this meeting.

Please complete the survey online if you are able. The survey can also be submitted via email by using the Word or plain text formats.

ADAPT Takes Salt Lake City!

Source: ADAPT

ADAPT fills an office - the ADAPT flag and many signs are visible - several read still Waiting for Community ServicesOn Tuesday, September 29, 2015, our brothers and sisters in ADAPT brought their Message to the Utah Capitol. Members of ADAPT, the national activist organization for disability rights, is taking its message to the Governor and State legislators today.

“The Governor is meeting with legislators to discuss Medicaid Expansion,” said Barb Toomer, ADAPT organizer. “We are here to pressure the Governor to implement the Community First Choice (CFC) Option. Disabled Utahns are languishing in institutions because the State does not have adequate home and community­-based services that will allow individuals with disabilities to live in their own communities near their family and friends.”

Tuesday was the third day of action involving non­violent, civil disobedience on the part of the nearly 150 individuals with disabilities from across the country.

On Monday, ADAPTers demonstrated at the headquarters of the Utah Departments of Human Services and Health to demand that executive directors Ann Williamson and Dr. Joseph Miner endorse the Community First Choice (CFC) Option now.

An office is filled with members of ADAPT - two at the forefront have signs that read My Medicaid Matters and ADAPT. One of the protesters is wearing a skull maskCFC is a community-based Medicaid state plan option, which would provide home and community-based services and supports to Utahns with disabilities so that they may live in their own homes rather than be warehoused in nursing facilities and other institutions.

“CFC will allow the state to draw down an additional $20 million annually in Federal Medicaid funding to provide the services and supports disabled Utahns need to continue to live independently in the community,” says Barb Toomer, ADAPT organizer from Salt Lake City. “Even though CFC will bring an infusion of dollars into the State, there has been no movement in making CFC a reality.”  [Read more...]

Rideshares, TNCs, and Accessibility

Madonna Long, Member of NCIL Transportation Subcommittee 

TNCs – Transportation Network Companies – are also known as Ridesharing. You may have heard of a few of them, such as Uber, Lyft, and Sidecar. Are they considered a public transportation company? TNCs say ‘no’. They respond that they are simply providing technology (via smart phone or other device) that connects people with a ride for a fare. But, isn’t that providing public transportation or an accommodation?

In the disability community, many say they are providing transportation just like taxi companies do. Many believe that these companies are sidestepping the importance of providing an accessible option for transportation to all citizens.

So who is a TNC Driver? A TNC driver is someone who has a personal vehicle and contracts with a TNC. They sign up on the TNC’s app to drive to make money by providing transportation to the public. TNCs so far are only permitted to get customers via an app, and not by other methods (phone, email, transportation stops, hailing) as taxis do.

TNCs are regulated mainly through state public utility commissions. Only a few states have passed legislation governing TNCs. Most regulation and legislation has had little or no protection for people with disabilities. Some local governments have also developed TNC policies, although many do not address accessibility for people who use power wheelchairs and scooters.  [Read more...]

Introducing the Youth Transitions Collaborative’s “Work Early, Work Often” Video Series

“Work Early, Work Often” is a video-based campaign created by the Youth Transitions Collaborative’s career preparation and management working group. Together, the three-part series highlights the importance of work and work-based experiences in an individual’s transition to adulthood, particularly for young adults with disabilities.

Youth Transitions Collaborative - Because the future needs everyoneEach video is told from the perspective of key audiences that are part of the transition journey: young adults with disabilities, employers, and parents or caregivers.

To watch the videos individually or as a series, visit or All videos include open captioning and audio descriptions. You can also watch the videos on a loop via the “Work Early, Work Often” playlist.

Information Alert: Updated DOL Home Care Rule Advocacy Action Steps

Our recent information alert discussed the recent decision by a U.S. Court of Appeals for D.C. to uphold the Department of Labor’s (DOL) Home Care Rule (PDF). Unless the Supreme Court takes action, the rule will go into effect on October 13, 2015, and your state’s long-term care programs, particularly consumer-directed programs, may be affected.

It is extremely important for advocates and consumers to understand this Rule and to be involved in states’ efforts to prepare for its implementation. The disability community’s input is vital in ensuring that states do not cut services, dismantle programs that allow consumers to control our services, or place caps on worker hours and earnings.

NCIL has worked with several other national advocacy organizations to develop advocacy documents to help you take action:

These documents outline important action steps to ensure that the state efforts towards compliance do not harm consumers or workers. The Rule’s effective date is rapidly approaching, so it is critical to begin your advocacy efforts now.

Webinar: National Aging/Disability I&R/A Survey Findings

On Thursday, October 8, 2015 from 3:00-4:30 p.m. Eastern, the National I&R Support Center will host a webinar with NCIL on findings from the 2015 Aging and Disability Information & Referral/Assistance National Survey.

In 2015, NCIL partnered with the National Association of States United for Aging and Disabilities (NASUAD) to conduct a national survey of I&R/A agencies in the disability and aging networks. This survey gathered data on key topics impacting I&R/A agencies, including referrals and service needs, use of social media, partnerships and system building, standards and quality assurance, training and certification, private pay, and Medicaid services.

Presenters are Nanette Relave, National I&R Support Center Director at NASUAD, and Lindsay Baran, Policy Analyst at NCIL.

No pre-registration is required to participate in the webinar. Information to log into the audio and webinar portions is provided below.

Join the webinar:

  • On a computer, use any browser with Flash. Nothing to download.
  • On a phone or tablet, launch the app and enter meeting code: nasuadwebinar

Join the audio conference:

  • Dial 888-346-3659
  • Access Code 33688#

Real Time Captioning:

Home Care Final Rule Implementation Webinar for NCIL Members

Wednesday, September 30; 1:00-2:00 p.m. Eastern

The Department of Labor (DOL) published a Final Rule on October 1, 2013 extending minimum wage and overtime pay protections under the Fair Labor Standards Act (FLSA) to most home care workers (who may have job titles such as home health aide or personal care assistant) who provide essential assistance to people with disabilities and seniors in their homes. On August 21, 2015, the U.S. Court of Appeals for the D.C. Circuit issued a decision upholding the Final Rule.

On Wednesday, September 30th from 1:00-2:00 p.m. Eastern Time, the U.S. Department of Labor’s Wage and Hour Division will hold a webinar for members of the National Council on Independent Living. Presenters will provide an overview of the Final Rule as well as the Department’s guidance regarding joint employment in domestic service employment under the FLSA.

Register online. Once you register, you will receive an email with the information you need to access the webinar.

Questions: There will be a question and answer period after DOL’s presentation. If you would like to submit a question(s) in advance, please email it to at your earliest convenience. During the webinar, we will respond to as many questions as possible.

More information: Information about the Home Care Final Rule is available at

An Introduction to the New Indirect Cost Rate Requirements for Centers for Independent Living

CIL-NET Presents… A National Teleconference & Webinar:

October 7, 2015; 3:00 – 4:30 p.m. Eastern

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

IL-NET Logo - CIL-NET + SILC-NETThis July, the US Department of Health & Human Services sent notification to all Centers for Independent Living receiving federal funds that they would need to submit an indirect cost rate proposal instead of the cost allocation plans required by the US Department of Education. CIL-NET is coordinating this teleconference and webinar as the first-step in helping CILs prepare for the new requirements. Join us in October to learn the basics of indirect cost rates, determine if your CIL will need an indirect cost rate, and what you can do now to prepare and simplify the process.

This training is an overview of indirect cost rates and the new requirement for CILs. Future trainings will address the details of actually developing your CIL’s indirect cost rate proposal.  [Read more...]