Learning about ADAPT

My first experience with the disability rights group ADAPT

By Timothy Redd
From March 13th through the 18th I was in our nation’s capital participating in ADAPT’S Spring Action. 

What is ADAPT? 
ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.

On Sunday, May 14, I attended a morning meeting informing me about the rules and procedures of an action, the history and many victories of ADAPT. Everyone learns about how to be involved in non-violent civil disobedience.

We lined up and took to the streets marching together to Upper Senate park for the annual ADAPT Fun*Run for Disability Rights. It's a time where everyone wheels or walks laps for sponsors who have donated to this cause.
There were speeches, fellowship, and lots of meeting and greeting. We also honored women and our mothers this Sunday in a very moving bit of theatre.  

The second day, Monday, May 15, we marched to the White House as people chanted with us and applauded. I was touched when a saxophonist played “We shall overcome” as we passed by. We protested at White house demanding the Trump administration:

• Publicly acknowledge that the Americans with disabilities are being denied their Constitutional rights to life, liberty and due process when they are denied Medicaid Long Term Services and Supports and forced into nursing facilities and other institutions;
• Demonstrate support for the Liberty of disabled Americans by advancing proposals that promote their community integration, such as Independent Living, MFP and Community First Choice.
• Issue a statement that the President and his administration support the Disability Integration Act, bipartisan legislation that ensures no disabled individual is denied their Constitutional right to liberty by requiring people with disabilities be provided a community-based alternative to institutional placement that allows them to lead an independent life.
• Designate Ivanka Trump as the Trump Administration’s “Ambassador for the Disability Community” and, during the next year, send her to visit ten model programs for transitioning people with disabilities into the community, convene round-tables in ten states to support them in developing effective systems for truly integrating people with disabilities, and work to advance the Disability Integration Act; and
• Convene a meeting between the Disability Community – represented by ADAPT and the members of the National Disability Leadership Alliance – and key officials in the Trump administration, including the Secretary of Health and Human Services, the Secretary of Housing and Urban Development, the Department of Labor and the US Attorney General to end the forced institutionalization of disabled Americans.

Over 80 ADAPT activists were arrested for civil disobedience at the White House while several women of ADAPT camped outside and protested on the lawn of Ivanka Trump. The women blocked the street and chanted until Ivanka came home to see the activists supporting mothers and women.
 
The second day of Action took ADAPT to the FDA White Oak Campus in White Oak, Maryland. Activists demanded that Scott Gottlieb, the FDA Director, immediately stop the torture of disabled Americans by finalizing the FDAs proposed rules banning the use of shocking devices. Over 80 ADAPTER’S were arrested at this site as well.

The United Nations has condemned as torture the use of “aversives” on disabled people who are forced to attend the Judge Rotenberg Center (JRC) in Canton, Massachusetts. ADAPT held a protest last October in which over 200 advocates occupied the entrance to the JRC. ADAPT is known for its work to end institutionalization and its promotion life in the community and its leadership see this as part of that larger project.

“We cannot stand idly by while our brothers and sisters at the Rotenberg center are tortured right here on American soil,” Said Bruce Darling an organizer with ADAPT. “No person should be tortured just because they are disabled, which is what the FDA is allowing by refusing to ban these devices!”

The so-called ‘aversives’ that JRC uses include painful electric shocks from a device more powerful than a police taser, to control disabled people's behavior and punish them for something as small as getting out of seat without permission. Jennifer Msumba, a JRC survivor, has called the shocks “a stinging, ripping, and pulling pain that froze time.”
In 2014, the FDA proposed regulations which would ban the use of these electrical shock devices. The FDA has failed to finalize the rule, however, despite significant public comment from the disability community. 

Our final day of action ended with direct grassroots support for disability rights. In order to rally your elected officials sometimes you have to meet them on their territory. I talked to Bob Corker’s, Steve Cohen’s, and Lamar Alexander’s staff. I asked them to support the Disability Integration Act (DIA) Senate Bill S 910 and House Bill HR 2472.
Attending an ADAPT action is a life changing experience. People with disabilities took over the city and let everyone know that disability rights are civil rights; especially elected officials. 

Anytime you are different in the world, it's a fight. To see an entire community of people with disabilities having a good time and supporting each other really is affirming to me. We are meant to be whom we are. Human rights are disability rights. There is much work to be done to reach liberation for all people and there is equality for all. 

There is something we can all do to help humanity. We can write senators and representatives. We can donate, volunteer, speaking up, help out, giving back, or march in the street. 

Good work is just good work.  I have to say I had many reservations about going to an action. Action days are grueling and it’s no way to describe an ADAPT action. I enjoyed meeting so many people and also talking to congressional and senate staffers the most.  

The biggest surprise in all for me was how well the actions are organized with safety being a chief concern and that I manually pushed myself for miles all across DC. 

One event stands out; as I was in the Rayburn building, I looked down the hall and I saw Congresswoman Maxine Waters. It was a pleasure to talk to her and get a picture as well. 

We the community of people with disabilities are powerful when we come together and there is no greater testament of that power until you experience an ADAPT party. To see so many enthusiastic people fighting for our civil rights was humbling, eye opening, and exciting. 

To learn more about ADAPT you can access the official website at adapt.org. If you interested in becoming a member of ADAPT or learning more group meetings are held every Friday here at MCIL at noon.

Clift’s Notes

NFB Legislative News

By Christina Clift, MCIL Consumer Advocate
During the May meeting of the Memphis chapter of the National Federation of the Blind, members were updated on the status of our current legislative efforts in Washington.  We have made great progress on all of our legislative issues. We are up to seventeen cosponsors on AIM HIGH, H.R. 1772, five cosponsors on the Access Technology Affordability Act, H.R. 1734, and seven cosponsors on the TIME Act, H.R. 1377. In the Senate, the Access Technology Affordability Act, S. 732, has one cosponsor.

Congress will be in session all next week before taking their one-week Memorial Day recess.  Please contact your representative and ask them to cosponsor H.R. 1772, H.R. 1734, and H.R. 1377. Don’t forget to contact Senator Alexander and Corker and ask them to cosponsor S. 732. The best way to contact your member of Congress is to call the Capitol Switchboard at (202) 224-3121 and ask for the office in question. Emailing your member of Congress is also a good idea. So pick up your telephone and help us get our Tennessee representatives on board! Finally, you may also want to request a meeting with your member of Congress while they are back at home during the week of Memorial Day.

In other meeting news, the Memphis chapter in partnership with Clovernook Center for the Blind and Visually Impaired, Tennessee Association of Blind Athletes Memphis, and the Veteran’s Administration will be walking across the Big River Crossing during October as part of the Federation’s Meet the Blind month campaign. Other activities will include our White Cane Awards Banquet and fall picnic.  More details will follow.

Next, the outreach and public relations committee will begin working on increasing our chapter’s social media presence on Facebook, Twitter, and other platforms, participating in possible radio interviews, and creating a brochure or flyer for outreach events.  They will also be working on trainings for local businesses on how to better serve individuals who are blind or low vision.

Finally, our chapter meeting ended with a presentation by Strong One and Sky Ways Transportation.  They are small transportation providers in the Memphis area who serve individuals with disabilities.  Both businesses base their fares on the amount of miles traveled and take reservations on a first-come first-served basis.  For more information you can contact Strong One Transportation at (901) 833-7152 or Sky Ways Transportation at (901) 691-1578.
Our next chapter meeting will be held on Saturday June 17, 2017 at 1:00 PM. For more information on how you can join and become a part of our movement, you can contact us at (901) 213-6270 or via e-mail at memphis@nfb-tn.org.  You can also visit our website at httP://www.nfb-tn.org.

Bill Summaries

Accessible Instructional Material in Higher Education Act, H.R. 1772 (AIM HIGH)
This bill will promote instructional technology and content that are accessible to the blind and other students with print disabilities.

Access Technology Affordability Act of 2017, H.R. 1734 and S. 732 (ATAA)
These bills will facilitate the purchase of access technology for blind people by creating a refundable, per person tax credit. Read the Access Technology Affordability Act of 2017 fact sheet to learn more.

Transitioning to Integrated and Meaningful Employment Act of 2017, H.R. 1377 (TIME)
This bill will increase employment opportunities by removing stigmas and low expectations propagated by section 14(c) of the Fair Labor Standards Act. Note that the bill now phases out subminimum wages over a six year period corresponding to the recommendation of the National Council on Disability. Read the TIME Act fact sheet to learn more.
 

Current Cosponsors Listed Alphabetically By State

Accessible Instructional Material in Higher Education Act, H.R. 1772 (AIM HIGH)

Rep. Roe, David P. [R-TN-1] - Sponsor
Rep. Young, Don [R-AK-At Large]
Rep. Garamendi, John [D-CA-3]
Rep. Courtney, Joe [D-CT-2]
Rep. Murphy, Stephanie N. [D-FL-7]
Rep. Hanabusa, Colleen [D-HI-1]
Rep. Kinzinger, Adam [R-IL-16]
Rep. Krishnamoorthi, Raja [D-IL-8]
Rep. Brooks, Susan W. [R-IN-5]
Rep. McGovern, James P. [D-MA-2]
Rep. Kildee, Daniel T. [D-MI-5]
Rep. Harper, Gregg [R-MS-3]
Rep. Thompson, Bennie G. [D-MS-2]
Rep. Stefanik, Elise M. [R-NY-21]
Rep. Price, David E. [D-NC-4]
Rep. Thompson, Glenn [R-PA-5]
Rep. Gonzalez-Colon, Jenniffer [R-PR-At Large]
Rep. Sensenbrenner, F. James, Jr. [R-WI-5]

Access Technology Affordability Act of 2017, H.R. 1734 and S. 732 (ATAA)

Rep. Young, David [R-IA-3] - Sponsor
Rep. Roybal-Allard, Lucille [D-CA-40]
Rep. Bilirakis, Gus M. [R-FL-12]
Rep. Hanabusa, Colleen [D-HI-1]
Rep. Moulton, Seth [D-MA-6]
Rep. Smucker, Lloyd [R-PA-16]

Transitioning to Integrated and Meaningful Employment Act of 2017, H.R. 1377 (TIME)

Rep. Harper, Gregg [R-MS-3] – Sponsor
Rep. Calvert, Ken [R-CA-42]
Rep. Swalwell, Eric [D-CA-15]
Rep. Schakowsky, Janice D. [D-IL-9]
Rep. Pingree, Chellie [D-ME-1]
Rep. Lujan Grisham, Michelle [D-NM-1]
Rep. Kaptur, Marcy [D-OH-9]
Rep. Gonzalez-Colon, Jenniffer [R-PR-At Large]

MICAH begins local organizing effort

MCIL adds accessibility to the community ideal

By Tim Wheat
The group MICAH is organizing to make Memphis a just and equitable community. They met last night at the Clayborne Temple downtown to work on the general areas of concern: Poverty, education and crime. MCIL was there to make sure that accessibility is part of the mission.

Emma Johnson explained the process for the evening's meeting. MICAH was holding a “world cafe” to capture conversations of diverse groups of Memphis residents. Each table of four to six had a host who remained seated at the tables while the participants moved around to mix-up the thought process. Most of the table hosts were members of MICAH’s executive committee.

The auditorium of the Clayborne Temple is still being renovated and a large section of the ceiling had no plaster. The original lathe boards were visible and one large exposed brick column was unfinished to the left of the stage. Tracy Spencer, the president of MICAH, told everyone that the iconic I AM A MAN posters that sanitation workers used in the 1968 campaign for equality were made in the Temple.

Emma Johnson explained how the world cafe works and gave participants suggestions and etiquette to guide in the discussions. She told about the concept of “listening to the middle,” as a way of seeing deeper connections and shared themes. Ms. Johnson also explained to participants some cafe etiquette to ensure listening, speaking from the heart and focusing on the topic. But overall, Emma Johnson asked participants to play and have fun.

The first question for the MICAH World Cafe was: What would a just Memphis look like? At various tables people generally spoke of housing, real desegregation and a sense of community. More directly, one participant said that a just Memphis would mean people walking everywhere; children playing with neighbors and people out of their homes engaged with others in the community. The vision included people using public transportation and being less dependent on cars and people with disabilities being fully and equally engaged in the public sphere.

Another question the world cafe dealt with was: What will it take for Memphis to become a just community? Ms. Emma Johnson asked participants to phrase the question like this:

“If Anderson Cooper were to come to Memphis to do a story on how the city became a just community,” she said. “What would you tell him was the important action that MICAH had taken to create a just city?”

One table gave the standard answers, education, housing and transportation. But the host challenged those responses as more of the same and would not result in a just community.

“What if,” the table host said, “Memphis organized 100 agencies with thousands of people to make a difference. Could one or two hundred thousand people make a change in this city?”

The challenge made participants in the world cafe think of real power. The standard options generally required money, but organizing for justice could guide how public money is spent. People can demand and guide solutions.

IL Centers exempted from Day Services License

PART ONE: Tennessee begins a state program that leaves out the state’s Centers for Independent Living

The state of Tennessee developed a unique service with the new Employment and Community First initiative. Tennessee Amendment 27 was the first attempt in the U.S. to bring integration and independence to Americans that were often trapped on waiting lists for programs. All of the state’s six IL Centers were asked to be a part of providing the tools to help people with disabilities all over the state to live independently and to work for employment and self-sufficiency.

July 1, 2016 the program went live and MCIL had done the work to build our program and services from scratch. In the ECF program we offer: Peer-to-peer Self-Direction; Community support, development, organization and navigation; Health Insurance Counseling (Forms Assistance) and Independent Living Skills Training. At the time we were also offering Personal Attendant Services and Supportive Home Care through our existing PAS Services department.

MCIL desperately needed more service hours for our PAS program and those two ECF services seemed to be in demand. Increasing our capacity with ECF Personal Attendant Services and Supportive Home Care seemed just what the Center needed to continue consumer oriented home and community services. MCIL did not get any of the first ECF referrals and by October we had paid for all necessary training and background checks for our staff and we had been certified by both Managed Care Organizations.

To date, MCIL has not received a single appropriate referral. We have heard from five people and some “Support Coordinators” from the MCO’s, but none were looking for services that MCIL had agreed to provide. One referral may have included services we offer, but it was from a county outside our area.

Since the beginning of 2017, it has been very hard here at MCIL because our PAS program dipped below the hours needed to keep it sustainable and keep the dozens of Direct Support Professionals employed. In March MCIL had to end the program and two additional professionals who administered the program lost their jobs. The state’s ECF program said they had 1,700 slots in the first year but not one appropriate referral came to MCIL.

MCIL did not end its ECF program however, although clearly we could not offer Supportive Home Care and Personal Assistance services because we no longer had a PAS program. The MCOs did not call for any of the other services that MCIL had to offer.

From the beginning, we had assumed the IL Skills would be our bread-and-butter. MCIL has more than 32 years of IL experience in the community and it is our calling-card, it is in our name.

The Memphis Center for Independent Living never removed the service “IL Skills Training” from our Policy and Procedure Manual but the Managed Care Organizations apparently could not approve us to provide IL Skills because, they claimed, an IL Skills provider must have be a “Licensed Day Habilitation Provider” in order to be credentialed by the Managed Care Organizations.

The MCO’s did not have any problem with us continuing to list IL Skills as a service we provide, because they could not coherently explain why we would need a Day Services license. It did not make any sense. The IL Skills according to the state regulations could not be provided in a facility and had to be one-on-one services offered in the least restrictive setting.

From early on in this process, the Statewide Independent Living Council and other CILs in the state were advocating to get rid of the Day Services license. The other Tennessee CILs were working on developing ECF programs of their own and saw the license as a barrier. One-by-one the CILs dropped out of the ECF program for a variety of reasons, including the burden of the unnecessary license.

PART TWO: Changing the license requirement

LETTER: Tim Wheat, Program Director Memphis Center for IndependentLiving to Dr. Wendy Long, Director of TennCare

LETTER: Patti Killingsworth, Assistant Commissioner and Chief of Long Term Services and Supports to Tim Wheat

IL Centers exempted from Day Services License - Part 2

PART TWO: TennCare drops the requirement for Independent Living Centers to have a Day Services License

EDITOR’S NOTE: This is part two about advocate’s work to provide ECF Services in Tennessee. Please read PART ONE: Tennessee begins a stateprogram that leaves out the state’s Centers for Independent Living.

The Tennessee Employment and Community First Program had a requirement that providers of Independent Living Skills Training must also be a “Licensed Day Habilitation Provider” in order to be credentialed. The burden of this license is one of the reasons that Tennessee CILs dropped the ECF services.

MCIL was approved by the two Managed Care Organizations to provide some ECF services, but the Center was informed that the Day Services License was essential to provide IL Skills Training. Since the ECF program began in July of 2016, no one was really clear on why the requirement existed. The MCO representatives agreed that IL Skills by regulation could not be provided in a facility.

The Day Habilitation license also has requirements on the staff who provide the services; however, the ECF requirements are more stringent. The Day Services requirement mandates at least one staff member is available for every six clients, while ECF is essentially a one-on-one skills training. Background and registry checks are also required by ECF so there is no material part of the Day Habilitation license that would be relevant.  

Of course the purpose of the Day Services license is to approve the physical environment where services are provided. There is absolutely no need for the license where training is to be in the individual's home and community.  It is an absurd requirement.

“The odd requirement to be a ‘Licensed Day Habilitation Provider’ seems in contrast to the stated goals of the ECF CHOICES program and has no benefit for the state or individuals that may use the program,” MCIL said in a February letter to Dr. Wendy Long, the Director of TennCare. “Most importantly, please note that providing Independent Living Skills training according to the ECF CHOICES Guidelines would prohibit any provider from using a facility or adult day care center because the services are to be delivered in the community, in the least restrictive setting and in the individual’s home and community.”

On April 21, 2017 the state essentially changed the requirement. In a letter to the Program Director of MCIL, Patti Killingsworth, the Assistant Commissioner and Chief of Long Term Services and Supports wrote that the provider qualifications would be adjusted.

“A Center for Independent Living,” said Ms. Killingsworth in the April 21st letter, “as defined in federal law, that is receiving federal funding from [the] federal Department of HHS to operate as a Center for Independent Living is qualified to provide services in the Employment and Community First CHOICES program that would otherwise require an Adult Habilitation Day Facilities license.”

The state carved out an exemption for CILs, they did not get rid of the unnecessary requirement. The ECF services are to focus on individual integration and independence, the adult day services concentrate on safety. This is the contrast that MCIL noted in the letter to TennCare Director Wendy Long, the state grants approval for a program that has a license, even though the license has nothing to do with the services offered.

Nearly a year after the program rolls out, MCIL may offer Independent Living Skills training. However, the Center and other CILs in Tennessee cannot have a good feeling about the long-term viability of the program. Most importantly is how long it took to have the state recognize the problem with the day services license. For a year MCO’s and TennCare recognized the problem; facility license for non-facility services, and failed to act.

In my dealing with MCOs, they listened politely to our case, but simply agreed that the requirement did not make sense. Reason did not climb the ladder to action. For most CILs and small providers in the state, the unreasonable requirement to have a Day Habilitation license seems to be just another bureaucratic hurtle that made the overall program not worthwhile.

MCIL may provide IL Skills Training now because of the finding of the state, but the struggle of all the CILs, the SILC and small providers may say more about the future of the Employment and Community First Program.  

PART ONE: Tennessee begins a state program that leaves out thestate’s Centers for Independent Living

LETTER: Tim Wheat, Program Director Memphis Center for IndependentLiving to Dr. Wendy Long, Director of TennCare

LETTER: Patti Killingsworth, Assistant Commissioner and Chief of Long Term Services and Supports to Tim Wheat