the advocacy monitor

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

Ask Your Members of Congress to Reject White Nationalism

On Election Day, just weeks after hate crimes in Kentucky and Pittsburgh rocked the nation, the majority of American people voted to change the direction of this country, away from the hate and bigotry that have overtaken our nation as the threat of white nationalism has grown.

Today, NCIL is joining our friends at Bend the Arc: Jewish Action in launching a new campaign to ask every member of the new Congress to go on the record to reject white nationalism and recognize its threat to our communities and our democracy.

Can you help us launch in a big way? It’s going to take all of us to get this demand into the hands of as many members of Congress as possible before they are sworn in on January 3rd.

Go to right now to find your representatives and ask them to sign on.  [Read more…]

Organizers Forum: Disability Rights and Emergency Management – Getting It Right Before, During, and After Disasters

NDLA Logo - National Disability Leadership Alliance - Nothing About Us Without UsIn the wake of hurricanes in the south and on the east coast, and now huge fires raging in California, learn what is happening in the field of emergency management and disability rights. What should we as disability organizers do to improve things for disabled people in areas hit by disasters? What policies or practices should we be fighting for?  [Read more…]

GAO Requests Information from NCIL on Medicaid Eligibility

In 2011, the National Council on Independent Living joined a coalition of other groups in commenting on Centers for Medicare & Medicaid Services (CMS) rules related to implementing eligibility determinations under the Patient Protection and Affordable Care Act (PPACA). The comments related to concerns that people with disabilities might lose access to home and community based services, Medicaid Buy-In programs, and other long-term services and supports if they were determined eligible for a “new adult” group created as part of Medicaid expansion.

Although CMS addressed these comments in their final regulation, the Government Accountability Office (GAO) is interested in learning more about how states are implementing this guidance. The GAO is interested in learning from NCIL members who have experience assisting individuals to apply for Medicaid before and after implementation of PPACA, or general knowledge of this process, specifically as it relates to individuals who could benefit from home and community based services waivers and Medicaid Buy-In programs.  [Read more…]

Have You Had Problems with Medicare’s ‘In Home Rule’?

The Centers for Medicare & Medicaid Services’ (CMS) ‘In Home Rule’ restricts Medicare coverage of mobility assistive equipment (wheelchairs, walkers, scooters, and other mobility devices) to only those needed for assistance with Mobility-Related Activities of Daily Living (MRADLs) in the home. MRADLs include things like feeding, grooming, bathing, etc. Medicare does not consider someone’s needs outside of the home when determining which assistive device to cover.

NCIL has been asked to provide examples of people who have experienced barriers because of the In Home Rule. If you have had difficulty getting the appropriate wheelchair or assistive device, been denied a needed device altogether, or if you are not able to use your wheelchair or other assistive device in the settings you need because of this rule, we want to hear from you! Please contact and share how the In Home Rule has impacted your life.

NCIL Queer Caucus Condemns Trump Administration’s Call to Erase Transgender Identity

The NCIL Queer caucus condemns the Presidential Administration’s call to erase transgender identity from being recognized by the United States government. Through a unilateral set of policies targeting gender recognition, the transgender community will be put at even greater risk. Obama-era protections will be no more.

The transgender community already faces high unemployment, poverty, intimate partner violence, violence from police, and housing discrimination. The government recognition of gender identity had become a small step toward normalcy for many trans citizens. The ability to change gender markers — gender as identified on government documents — is not only a means of personal gender affirmation, but a label legitimizing gender. Bringing an I.D. to the bartender, using a public toilet, or getting on an airplane is no longer Russian Roulette for outing one’s self. Reports show that outing is a very dangerous act in a world still wrestling with the concept of trans identity. 27 transgender individuals have been murdered this year– many of them women of color. Gender markers are added protection against violence.

The NCIL Queer Caucus condemns the silence of the medical community on the issues of gender identity. Scientists have been the biggest ally to confirming that chromosomes are not the only definition of sex in humans. Despite evidence confirming gender identity, the scientific community is being silent on the attacks on the transgender community. The valuable information they provide is key to forming comprehensive and realistic policy around the issue.

22% of the transgender community identifies as having a disability compared to the general population of around 6%. Access to medical care, equal treatment under the law, access to jobs, housing, and safety are all concerns connecting the disability and transgender community.

Become a member of the NCIL Queer Caucus to help us organize and support the LGBTQ community, because we will most likely continue to see attacks on our population for the next several years. Be the change you want to see in the world! Learn about NCIL’s committees and caucuses and join today.

CIL-NET Presents… A National Teleconference & Webinar: Disability & Diversity Data – How Centers for Independent Living Can Use Data Mining and Community Mapping to Address Diversity

IL-NET Logo - CIL-NET + SILC-NETMost of us care deeply about the diversity of our consumers and ensuring that we are reaching everyone in our communities that could benefit from IL services and programs. But it can be very difficult to determine who you aren’t serving. Data mining and community mapping can paint a more complete picture of your community – where are the people with disabilities, who are you serving and who are you missing. Who has the time and expertise to go through census data though, right?

Join us on January 16th to learn how one CIL has connected with university to get exactly the data they need to improve their outreach and programs. Our presenters will also share how you can take the mystery out of data mining to begin to find and analyze data from common, publicly available sources.

Sign up today!  [Read more…]

Achieving Accessibility for Election Websites and Sample Ballots: A Toolkit for Disability Advocates

Is your local election office’s website accessible to voters with disabilities? Election office websites are hubs of information for voters, providing pertinent information throughout the election process, such as what’s on your ballot and where your polling place is located. For voters with disabilities, accessing this information is especially critical as they look for information on accessible voting options or how to advocate for removal of access barriers that they experience at a polling place. Unfortunately, even though these websites are mandated by law to be accessible to people with disabilities, they often have significant access barriers that impact people with a range of disabilities.

NCIL logo - National Council on Independent Living“Achieving Accessibility for Election Websites and Sample Ballots: A Toolkit for Disability Advocates” is a toolkit to help local advocates not only understand the access barriers on election websites and sample ballots, but also help them form a strategy and approach local election officials to remove these barriers and make voter information accessible to voters with disabilities. The toolkit provides information and resources that help both advocates and election officials understand the user experience from the perspective of users with a range of disabilities, including vision, mobility, and cognitive disabilities, and strategies to help local advocates engage election officials in efficient and effective discussion. Advocates can use this guide to begin building a relationship with election officials not only to address website access barriers, but to address other access barriers in the voting process to make the fundamental right to vote accessible to all American citizens.

“Achieving Accessibility for Election Websites and Sample Ballots: A Toolkit for Disability Advocates” is available in PDF, Word, and plain text.

Your Election Day Voting Resources

It’s Election Day and all around the country, voters like you are making a difference.  Voting is a way for you to make your voice heard on issues that matter to you – issues like healthcare, education, and more.

Voting can be tricky when you have a disability.  That’s why we put together this list of resources so that you can exercise your right to vote today and cast your ballot privately and independently.

Getting to the polls:

  • Uber and Lyft are providing free or discounted rides to the polls, along with several bike companies, scooter companies, and public transportation systems.
  • Carpool Vote is a service that matches drivers with voters in need of a ride. You can request an adapted van with a lift through this service, mark that you will be traveling with a service animal, and/or request any other accommodations (such as help folding equipment).

At your polling place:

After voting:

NCIL Path to Empowerment for Consumers with SCI Grants

NCIL is excited to announce that we have received continued funding from the Craig Neilsen Foundation for Path to Empowerment projects! NCIL is seeking five (5) to ten (10) Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), or Independent Living Associations that are interested in providing programs to enhance the quality of life for people with spinal cord injury (SCI).

Eligibility – Applicants must:

  • Be a current NCIL member;
  • Be a Center for Independent Living (CIL), Statewide Independent Living Council (SILC), or Independent Living Association; and,
  • Provide matching funds of at least 5% of the total funds requested from NCIL.

NCIL will provide funding ranging from $10,000 to $25,000 to support Independent Living; Rehabilitation; Employment; Assistive Technology; Arts, Sports, & Recreation; or Education programs. Examples include:

  • Independent Living – one-to-one or group IL skills training; one-to-one visits to people with SCI in rehab facilities, one-to-one assistance to individuals wanting to leave nursing homes for more independent living arrangements;
  • Rehabilitation – patient assistance funds to offset costs of rehab for individuals with SCI, educating newly injured individuals and their families on SCI;
  • Employment – assistance with resume and interview preparation, applying for jobs and learning how to handle disability issues or concerns during the interviewing, hiring and employment process;
  • Assistive technology – assisting consumers in identifying and acquiring necessary technology to enhance independence and quality of life;
  • Arts, Sports, & Recreation – programs that teach wheelchair sports, provide fitness, wellness and nutrition opportunities and exercise classes, visual, written, and performing arts classes, exhibitions, and performances for people with SCI;
  • Education – one-to-one or group tutoring, preparing newly injured students with SCI to return to school/university; GED classes for consumers.

NCIL will select the applicants that best demonstrate the capacity and resources necessary to make the greatest impact for consumers with SCI. All program applicants in each focus category must demonstrate the capacity to enhance quality of life for people with SCI. Additionally, applicants should document how they will fulfill the Neilsen Foundation evaluation criteria including impact, innovation, and relevance to the area of focus on traumatic and chronic spinal cord injury; feasibility based on documented experience, expertise, available resources, and organizational commitment; sustainability of proposed project or program; collaboration and demonstration of meaningful community partnerships including the avoidance of duplication of services and demonstration of shared community resources; and clear project evaluation methods. While applicants must communicate how their proposed activities will improve outcomes for consumers with SCI, NCIL acknowledges and appreciates that programs funded under this grant will serve consumers with all types of disabilities.

The application and project timeline is as follows:

  • November 7 2018: 2019 Path to Empowerment RFP opens
  • December 5, 2018: 2019 Path to Empowerment RFP closes
  • January 5, 2019: Grantees selected
  • January 15, 2019: Pass-through money distributed to Grantees
  • February 1, 2019: Grantee programs begin
  • October 30, 2019: Project ends
  • November 12, 2019: Grantee final reports due

To apply, interested parties must use the Application Form, which is available online.  We are also providing Word and plain text formats in case you want to look through the application or experience any access issues with the online form.

The application deadline is 11:59 PM EST, Wednesday, December 5, 2018.

An Update from the NCIL Mental Health Subcommittee

By Yvonne Z. Smith, Subcommittee Chair

Advocacy around mental health is becoming an even more important issue. Legislation proposed under H.R. 6180Mental Health Care for Children Inhumanely Separated from Parents by the Federal Government Act of 2018 will provide mental health services for children separated from their parents. The trauma that is created by separating children from their parents especially very young children is well documented. H.R. 6180 was introduced on June 21, 2018 in the House by Representative Nanette Diaz Barragan (D-CA). As of August 6, 2018 it has been referred to Subcommittee on Immigration and Border Security.

NCIL logo - National Council on Independent LivingAnother bill to watch is S. 2513School Safety and Mental Health Services Improvement Act of 2018. Senator Lamar Alexander (R-TN) introduced S. 2513 in the Senate on March 7, 2018. S. 2513 amends the Elementary and Secondary Education Act of 1965 to allow state and local educational agencies to use certain federal funds for activities related to school safety, including: (1) infrastructure improvements to prevent, mitigate, or respond to incidents of school violence; and (2) professional development for school personnel in mental-health awareness, crisis response, and other programs designed to reduce and prevent school violence.

The bill also amends the Public Health Service Act to expand the programs for which the Department of Health and Human Services may provide financial support to assist local communities in helping children deal with violence. Such programs may include those designed to provide mental health and substance-use disorder assessments, crisis-intervention training, counseling, treatment, and referral.

The community must resist any connection of persons labeled mentally ill with danger. Parents should not have to disclose the mental health conditions of their children.

Paolo del Vecchio, MSW, former Director of the Substance Abuse and Mental Health Services Administration (SAMHSA) Center for Mental Health Services (CMHS) has been transferred out of his position. A community voice has been lost. Mr. del Vecchio, a positive resource for mental health at SAMHSA for over 20 years, gave voice to persons who were labeled with mental illness.