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Independent Living News & Policy from the National Council on Independent Living

Online Survey: Accessible Sleeper for Passenger Rail Design

An Oregon State University research team is developing designs of an accessible sleeper compartment for the next generation of bi-level long-distance passenger rail cars. The team is interested in learning your opinions about your needs or experiences during long-distance rail travel by passengers who are older or may have disabilities.  The information you provide will help the research team inform the passenger rail industry, federal regulatory and policy agencies to make changes that will make long distance rail travel more accessible for everyone.

[Read more…]

Free Business Acumen Webinar: Planning to Plan? Tools to Use to Help You Better Understand Your Current Business Environment

Source: NASUAD: National Association of States United for Aging and Disabilities

Business Acumen Center Logo - Providing Resources to Sustain Disability OrganizationsBusiness Acumen describes an organization’s ability to quickly and keenly understand and address a business situation in a manner that will likely lead to a good outcome. The first step in doing so is in understanding the world around you. As a Community Based Organizations (CBO*) serving people with disabilities, you may be seeking to diversify your payer portfolio or develop your business as a response to a new method of delivery such as a state transition to Managed Long Term Services and Supports (MLTSS). To ensure that you are fully informed when you begin, you will need to conduct some background research on the current or anticipated political environment, economic conditions, demographics and changes or opportunities within related organizations. Each of which will help you understand the environment you are in or will be entering.  [Read more…]

Upcoming Webinar on Assessing Youth/Young Adult Voice in Agency-Level Decision Making

Source: Research and Training Center for Pathways to Positive Futures

  • Date and Time: Tuesday, October 24, 2017; 1:00-2:00 p.m. Eastern; 10:00-11:00 a.m. Pacific
  • Register online

Increasingly, agencies and organizations that serve youth and young adults are seeking to partner with young people as they work to make their services more engaging and responsive. However, agencies often lack information about best practices for involving young people in these efforts. This webinar will describe the development and validation of the Youth/Young Adult Voice at the Agency Level (Y-VAL) assessment. The Y-VAL is intended to serve both as a guide to best practices and as a measure of the extent to which an agency is meaningfully supporting young people’s involvement in advising and decision making.

Information Alert: An Update on the Administration’s Recent Efforts to Undermine the Affordable Care Act

Last week, the Trump Administration took two actions to undermine the Affordable Care Act (ACA). We want to make sure you have an understanding of what these two actions mean, and how they may impact people with disabilities and / or pre-existing conditions.

October 12 Executive Order (EO)

Last Thursday, Trump signed an executive order directing three federal agencies (Health and Human Services, Labor, and Treasury) to create rules to allow the sale of insurance across state lines, expand the use of association health plans, and broaden the use of short-term / catastrophic coverage.

  • Association Health Plans (AHPs) provide small businesses with a way to pool together to buy insurance, and under the Affordable Care Act (ACA) they are required to cover all of the law’s essential health benefits. The EO looks to expand the use of AHPs, as well as to ease the federal rules around them.
  • Short-term limited duration insurance is intended to fill gaps in coverage by providing bare-bones coverage for up to 3 months. These plans are not required to abide by ACA regulations and they provide coverage that is far from comprehensive. The EO looks to expand the use of these short-term policies.

There is much uncertainty surrounding these directives, but there are several clear concerns. Easing the federal rules around AHPs could pave the way for these plans to be exempt from core requirements, like covering the essential health benefits. Expanding the use of both AHPs and short-term insurance will result in people with fewer healthcare needs leaving the ACA markets, resulting in higher costs and fewer options for people with pre-existing conditions and disabilities who need the protections and coverage mandated by the ACA.

October 13 Decision to End Cost-Sharing Reduction Payments

On Friday, Trump announced his decision to end cost-sharing reduction (CSR) payments to insurers. CSRs are payments made to insurers under the Affordable Care Act (ACA) to enable them to lower deductibles and out-of-pocket costs for low-income individuals. Eliminating these payments will make it significantly harder for insurers to provide affordable coverage options. With open enrollment just weeks away, it is too late for insurers to change their rates; however, it is expected that some insurers may decide to pull out of the market as a result of this decision. Moreover, we can expect further fallout in 2019. The CBO predicted that without CSR payments, premiums for silver plans will rise 20%.

Again, there is uncertainty surrounding this action as well. The pressure is on Congress, who can still pass legislation to fund CSRs. As of the time of publication of this article, Attorneys General from 18 states and D.C. have filed a lawsuit against this decision.

The full impact of both of these actions may not be known for some time, but what’s clear is that Trump has taken it upon himself to undermine the ACA however possible. And as we well know, efforts to undermine the ACA by loosening regulations, create plans outside the ACA markets, or deny legally required payments will harm people around the country and disproportionately impact people with pre-exiting conditions and disabilities.

NCIL will continue to keep you updated as more information becomes available.

Buy a Disability Power T-Shirt and Support NCIL!

Black t-shirt with Disability Power emblem on front center. Emblem is a white wheelchair accessibility symbol with a stylized raised fist in the center.University of Illinois at Urbana-Champaign student Cole Anderson has designed a new disability pride t-shirt. We’re excited to announce that Cole will donate all proceeds from the t-shirt sales to NCIL!

Shirts cost $20 each, with an option to make an additional donation to NCIL. The campaign will end at the beginning of November, with shirts being shipped after the campaign closes.

Says Anderson: “I value and support NCIL because I have a right to a dignified life. Disabled citizens have a right to the same chance to contribute to their society. I’m an engineering student at a top university. But I’m only able because of disability rights activists fighting to show I have potential. I have the services I need to be able to go to school and live an independent life. NCIL fights to make sure the disabled children of the future have that chance too.”

Thank you, Cole Anderson! Buy yours today!

Information Alert: HCBS and Medicaid Waivers

Some States are requesting the Centers for Medicare & Medicaid Services (CMS) to approve new Medicaid Waivers and/or amend existing Medicaid Waivers that potentially undercut (1) the Supreme Court’s Olmstead decision; (2) the federal regulation’s “most integrated setting” mandate, and (3) the DOJ’s Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C.

The following information is intended to help disability advocates fight Medicaid Home and Community Based changes that States might seek, via a Medicaid Waiver, which will harm people with disabilities.

First, the Medicaid federal regulations, 42 C.F.R. § 304(f), requires notice of waiver changes:

“(f) The [State] agency must establish and use a public input process, for any changes in the services or operations of the waiver.

(1) This process must be described fully in the State’s waiver application and be sufficient in light of the scope of the changes proposed, to ensure meaningful opportunities for input for individuals served, or eligible to be served, in the waiver.

(2) This process must be completed at a minimum of 30 days prior to implementation of the proposed change or submission of the proposed change to CMS, whichever comes first.

(3) This process must be used for both existing waivers that have substantive changes proposed, either through the renewal or the amendment process, and new waivers.”

Second, the ADA federal regulations require that all services and programs, which include Medicaid Waivers, be provided “in the most integrated setting.” The U.S. Supreme Court in the Olmstead decision relied on this regulation and that decision is still good law. This is a very strong handle.  [Read more…]

Not Dead Yet Submits Public Comment on Proposal on Living Organ Donation By “Persons With Certain Fatal Diseases”

Source: Not Dead Yet

This is a complicated subject. It impacts people with disabilities in multiple ways, both as organ donors and recipients. But the tone and recommendations of the proposal by the Ethics Committee of the Organ Procurement and Transplantation Network needed a response. Some excerpts follow.

The organ transplant program saves lives, including some of our organization’s grassroots advocates. Its goals are of unquestionable significance. In order to function effectively though, it needs to have strong public trust and support. The safety of potential donors should be of utmost concern. All lives of living donors must be equally valued. The OPTN must never pursue any policies that expose some donors to more risk than other donors.

We agree that there are some underlying health conditions that would not preclude a willing person from being a living donor. Decisions must be made on a case-by-case basis with the preservation of the person’s normal health as a paramount value. We are therefore disturbed and disappointed by the tone and tenor of the proposal as well as the recommendations that would create a two-tiered system of assessment, reporting and scrutiny.  [Read more…]

NCIL Employment/Social Security Subcommittee Gains Momentum

By: Sam Liss and James Turner, NCIL Employment/Social Security Subcommittee Co-Chairs

NCIL Employment / Social Security Subcommittee Co-Chairs James Turner and Sam Liss are pleased to acknowledge that participation in NCIL’s Employment/Social Security Subcommittee seems to be gaining momentum over the previous few months. Fortuitously, this comes at a time when the Subcommittee is tackling many important issues within its purview. In conjunction with heightened interest, the Co-Chairs are asking members of the Subcommittee to assume leadership on particular issues.

At this time, the Subcommittee is heartened and encouraged because its two policy proposals, arising from its Medicaid Buy-in (MBI) Task Force, appear to be gaining traction within Congress: the Subcommittee was granted a ½ hour teleconference by the House Social Security Subcommittee of the Ways and Means Committee. Staffers asked critical questions about the Childhood Disability Beneficiary (CDB) proposal and requested follow up. The other proposal, regarding changing MBI authorization language in the Ticket-to-Work/Work Incentive Improvement Act, was referred to House Committee on Energy and Commerce, which holds jurisdiction.  Approaches to key members of Congress in both parties are under way. Both policy proposals would enhance employment incentives for those people with disabilities at retirement age.  [Read more…]

NCIL Submits Letter Opposing the ADA Education and Reform Act

On July 26, 2017, millions of people with disabilities throughout this country celebrated the 27th anniversary of the Americans with Disabilities Act of 1990 (ADA). Unfortunately, many in the business community decided to celebrate the anniversary by diminishing this historic civil rights legislation through a letter of support for the ADA Education and Reform Act of 2017 (H.R. 620). Their letter supporting this extremely dangerous legislation, which was sent to Congress, was titled It’s Time to Restore the Integrity of the ADA (PDF).

NCIL wrote a response to their letter, which was signed by 171 organizations and sent to Representatives Paul Ryan (Speaker of the House) and Nancy Pelosi (Minority Leader) on October 4, 2017.  [Read more…]

PVA Releases Informational Document on the Air Carrier Access Amendments Act

Paralyzed Veterans of America has released a one-page informational document on the Air Carrier Access Amendments Act (S. 1318).

The document is available in PDF, Word, and html (below). Please contact PVA with any questions.

The Issue

Over 30 years ago, President Ronald Reagan signed the Air Carrier Access Act (ACAA) into law. The ACAA prohibits discrimination based on disability in air travel. Despite progress, too many travelers with disabilities still encounter significant barriers, such as damaged assistive devices, delayed assistance, and lack of seating accommodations. Access for people with disabilities in air travel must move into the 21st century. Otherwise, people with disabilities will be left behind unable to compete in today’s job market or enjoy the opportunities available to other Americans.  [Read more…]