Author: cjohnmurph

National ADAPT mourns the loss of Representative John Lewis

National ADAPT mourns the loss of civil rights giant and disability rights community member, Representative John Lewis. As a leader of the Civil Rights Movement, his work and values inspired the founding of ADAPT and heavily impacted the work we continue to do. Many members of ADAPT have fond memories of running into Representative Lewis on the Hill where he often asked about the good trouble of the day and cheered us on. A tried and true activist, Lewis spoke several times at ADAPT rallies and bolstered the spirits of those in attendance. As a disability rights champion, he fought for legislation that supported the community and made impassioned speeches on the House floor in support of disability issues. During one such speech regarding his opposition to HR 620 the ADA Education and Reform Act, Representative Lewis said, “There is no place in our country for the burden to be placed upon those whose rights have and will be violated time and time again.” A statement he held true to as he continued to lift the voices of those who were too often silenced. 

At times like this, ADAPT strives to fight with the same spirit of Representative Lewis’ activism  for those whose rights are under attack. We hope to make the good trouble he always called us to make. This enormous loss weighs heavily on our hearts.

Rest in Power Representative Lewis. 

National ADAPT Statement on Covid-19 Deaths in Segregated Congregate Institutions

It is time to recognize the similarities between systemic police violence and systems that imprison people, how race and disability intertwine, and how all congregate institutions including prisons, institutions for people with developmental disabilities, psychiatric institutions, and immigrant detention camps arise from systems designed to oppress those whom society devalues.

Covid-19 has killed over 32,750  disabled people  in substandard nursing homes in the United States, with a disparate number of those being people of color, (https://www.nytimes.com/article/coronavirus-nursing-homes-racial-disparity.html). National ADAPT is compelled to speak out against this widespread and horrifying human rights catastrophe.

ADAPT strongly denounces the ongoing human rights violations committed against disabled people in all congregate care settings, and we reject the notion that age and underlying conditions sufficiently explain the outrageously high rate of death in these institutions. The occurrence of neglect, abuse, terror, and despair that disabled people experience daily in these facilities is well documented. Yet we continue to be socially removed from our families, homes, and communities in the name of cost-effectiveness, efficiency, or worse, for the convenience and comfort of non-disabled society, and the profit of health care professionals and shareholders.

No longer will we excuse or abide the socially accepted biases that dehumanize disabled people.

No longer will we accept the tired rationalization of “where else are we going to put them” that has been used to justify sending us to die in dismal human warehouses; nor, when deaths are expedited, that they are a natural outcome of age, chronic illness, and impairment, rather than the neglect and abuse fostered by ableist social structures and attitudes.

National ADAPT and our state chapters will no longer abide callous professionals, ignorant of disability theory and rights, who exploit us for their own personal career advancement, and for the advancement of their professions and agencies. We condemn the nonchalant discussions that we must regularly endure in professional forums—discussions, without us, about what is best for us, and questions about where significantly disabled people should be warehoused without any thought to community integration—and everyday discussion that dismisses or erases the annihilation of tens of thousands of disabled people as merely a “natural process” or even beneficial to society as a whole. We equally condemn the doctors with financial interests in congregate care institutions, who sign orders sending us there, again with no consideration of home and community settings and services.  

No longer will we accept the naive and hollow promises of institutional reform, as disabled people have endured neglect and abuse in institutions for over a hundred years without significant change despite countless acts, reviews, legislation, and congressional hearings. The Government Accounting Office (GAO) recently found that 82% of American nursing homes had an infection prevention and control deficiency cited in in one or more years, with about half of these facilities having had persistent problems and having been cited across multiple years. We need more diversion from institutions of all kinds, and more affordable, accessible integrated housing in our communities.

It is time to come to terms with the reality that abuse, neglect, and death are not isolated incidents that can be addressed individually through underfunded Ombudsman programs, insincere band aids of ‘culture change,’ or through impotent state regulatory agencies that remain stuck in antiquated medical model perspectives of disability. Instead, we must admit that dehumanization is the very bedrock of institutional segregation.


There is no excuse for the disregard of our basic humanity, especially 56 years after the passage of the Civil Rights Act, 30 years after the passage of the Americans with Disabilities Act and 21 years after the United States Supreme Court Olmstead decision.  Enough is enough!

*This number does not include death tolls from states that have been negligent in reporting infections and deaths in assisted living facilities, state institutions, groups homes, or other congregate ‘care’ settings, or who have reported to CDC, but have chosen not to make their numbers public.

National ADAPT’s Response to Vice President Biden’s Plan

Dear Vice President Biden,

National ADAPT commends you for your newly released Plan to Help Americans with Disabilities. Your plan demonstrates an understanding of the discrimination that people with disabilities face and a commitment to our rights. However, there is still work to be done. 

In order to truly mobilize the disability vote and demonstrate your respect and commitment to the Disability Community, you must hire a Senior Advisor on Disability Issues for your campaign, to help you engage respectfully with the Disability Community, to be a liaison to the Disability Community, and to assure true accessibility at all of your campaign events.

The language you use about disability in your written disability plan is far more respectful than the words you use when referencing the Disability Community in your speeches.  In your speeches you have claimed that “everyone” has a disability, that disabilities should be “overcome,” and that disabled people are “not defined” by our disabilities. These statements are harmful. It is not only inaccurate to say that “everyone” has a disability, but it undermines every person with a disability, and makes light of our disability identities. Suggesting that disabilities are negative attributes to overcome is ableist, when in fact what we must overcome are the barriers of stigma, discrimination, and inequitable systems. Declaring that we are “not defined” by our disabilities ignores the great many people who are disabled and proud, who want to be seen and respected as disabled people. A Senior Advisor on Disability Issues would help you choose respectful language as you prepare your speeches.

While your disability plan is comprehensive, it is not complete.
ADAPT demands:

1.    Housing; While the plan refers to affordable, accessible, integrated housing, it offers no specific plan to bring housing stock into line with the number of accessible units needed. The plan proposes to further invest in “supportive housing” which obligates tenants to use services or risk losing housing, conditions long opposed by disability advocates.There must be an increased number of affordable accessible integrated housing units independent of service delivery.


2.    Ending the Institutional Bias; The institutional bias exists across all payment and policy systems. Institutional entitlements and preferences embedded in federal law and regulations must end. Aggressive investment in community infrastructure must be concrete, specific and responsive to the needs of individual communities and the people who live there.


3.    Workforce Development; Increased wages are a start in addressing the personal care workforce shortage in the community, but the recruitment and retention of personal care workers only begins with dollars and cents. A comprehensive approach to the infrastructure that will develop a quality workforce as demands increase is needed.


4.    Covid-19; The section of your Covid Plan referencing people with disabilities and their care takers in the community must include the provision of sufficient personal protective equipment for both of these parties.

Thank you again, for finally releasing a disability plan. We look forward to working with a Biden Administration, and your Director of Disability Policy to assure that your campaign commitments become our reality.

Sincerely,
National ADAPT

ADAPT Demands that Congress Support Home and Community Services and Supports, Community Workforce, and Housing

The long existing need for the reform of outdated Medicaid long term care policy has never been more apparent than now, when thousands of disabled people of all ages have been dying in nursing homes and other congregate settings where they have no protection from the highly contagious COVID-19.

National ADAPT demands that Congress:

1.     Provide funding in any COVID Stimulus 4.0 package to pay for Home and Community Based Services and Supports (HCBS), and related workforce costs, housing, and transportation needs and support the Coronavirus Relief for Seniors and People with Disabilities Act of 2020 (S. 3544 and H.R. 6305). 

2.     Make Money Follows the Person permanent in law to ensure people can leave institutions and live in their own homes in the community.

3.     Designate the home and community workforce as essential, and ensure adequate Personal Protective Equipment (PPE) is provided for both home and community workers and the people they assist.

4.     Provide funding so that the essential community workers are paid a fair and living wage commensurate with the risks they take to provide essential services and supports, including paid leave time in case they fall ill, hazard pay and overtime.

5.     Immediately remove the “institutional bias” from Medicaid law and policy.

6.     Invest in massive support for development of integrated, affordable, accessible housing in cities, towns and rural areas; infrastructure and rental assistance; and emergency options that address needs caused by the COVID crisis.

PDF Version

Open Letter to Congress from the Real National ADAPT

Dear Congress:

For 30 years ADAPT has challenged the federal government’s preference to fund nursing facilities and other institutions over home and community based services and supports (HCBS) that most older and disabled people say they want. People have had the right to stay in their own homes and live in their own communities with the services and supports they need, instead of being forced into nursing facilities and other institutional/congregate settings since 1990.  However, this right has never been realized due to lack of support for home and community services, an extremely under-compensated and undervalued home and community workforce, and due to lack of affordable, accessible, integrated housing.  We call this the institutional bias.

This long existing need for the reform of outdated Medicaid long term care policy has never been more apparent than now, when thousands of disabled people of all ages have been dying in nursing homes and other congregate settings where they have no protection from the highly contagious COVID 19, and where staff have not been provided with sufficient personal protective equipment (PPE). Even as major media outlets are reporting on the increasing death tolls of our family members and friends dying alone in nursing facilities across the nation,  none of the trillions of dollars in COVID emergency spending that Congress has  passed has gone toward the real, long term solution: ending the institutional bias and supporting HCBS, the HCBS workforce, and affordable, accessible, integrated housing.

There is an old adage that the government doesn’t believe in prevention, and so you won’t fund a stop sign until a kid gets killed while crossing an intersection. The time for this stop sign has well passed. The tens of thousands of deaths caused by the Coronavirus could have been greatly reduced if our federal government had acted earlier, and if Congress had listened to National ADAPT for the past 30 years and reduced nursing home and institutional settings with much needed reform in long term care, workforce and housing policies.

So we say to you now, have enough people needlessly died that you will finally listen to National ADAPT and address the institutional bias? Now is the time to sufficiently fund home and community services. Now is the time to fund affordable, accessible, integrated housing. Now is the time to provide liveable wages to the essential workforce of direct support workers that allow us to live in the community. 

Now is the time because for 30 years we have told you that we want to live in the community. For 30 years we have told you that institutions are not safe for us. Now it is on the front page of your newspaper. Now it is in your newsfeed and you can not scroll past us anymore. Now thousands have died in nursing facilities and other institutions – our parents, our siblings, our friends. Now is the time for change. 

ADAPT is ready to come to the table and work with Congress to end the institutional bias anytime. Right NOW, we demand that funding for HCBS (including Money Follows the Person), community workforce, and housing (including emergency housing) be included in the COVID 4 package.

FREE OUR PEOPLE!

The Real ADAPT Community

PDF Version

Chicago ADAPT demanded Rep. Dunkin support a fair contract for child care and in-home service providers

By Scott Nance
Chicago ADAPT

On Monday, February 22, over 30 representatives of Chicago ADAPT and friends from at least 7 concerned organizations protested at Representative Ken Dunkin’s office at 2059 East 75th St. in Chicago.

Chicago ADAPT demanded Representative Dunkin support a fair contract for child care and in-home service providers as well as other public employees, support full funding of services and progressive revenue, vote in favor of Illinois House Bill 4351 (a bill protecting in-home services for people with disabilities and seniors), and to meet with Chicago ADAPT Wednesday, March 16 to continue dialogue.

Shelly Berry, a constituent in Dunkin’s district, remarked: “Representative Dunkin has turned his backs on us and we demand an apology for his recent remarks insulting the disabled community and betraying the public trust.”

Chants of betrayal and demands for representing the people and not corporate interests were apparently unheard by Representative Dunkin, as he refused to acknowledge the crowd assembled at his office doorstep.

Chicago ADAPT is a grassroots disability rights group dedicated to the civil rights, independence, and integration of people with disabilities.

DC & Maryland ADAPT action at the National Governors’ Association Conference

By Laura Halvorson
DC Metro ADAPT

February 27, 2017 (Washington DC) Today ADAPTers from Maryland and the DC Metro met for the final day of their action at the National Governors’ Association Conference. We stealthly entering the Dirksen building where the Media Briefing was taking place. The Governors were delayed at the White House, for a Governor’s Only Meeting. While the media were getting situated in the briefing room, Sheryl Grossman and Cara Liebowitz snuck into the room unnoticed and handed out brochures to the press. Cara was able to ask about the governors about Medicaid block grants and per capita caps. Governor McAuliffe of VA responded that he does not support those measures. After the press conference, we handed out more brochures and got interviewed by a local Spanish language TV station.

After the briefing we staked out the Kennedy Room in the Russell Building, where the governors were eating. Security was tight, but Laura decided to “go hard or go home” and got passed the security to start greeting them at the door. She handed our brochures to Governors Baker of Massachusetts and Sandoval of Nevada, and told them the importance of saving the ACA and saying no to block grants and per capita caps and how they will affect the disability community, particularly LTSS. One of the last to leave the room was Laura’s own Congressman, Gerry Connolly. She gave him a brochure and told him how ADAPT wanted the NGA to adopt the draft resolution and support our issues.

Our voices were heard loud and clear, and we have laid the groundwork to pursue action at the Summer NGA meeting in Des Moines. Until then, ADAPT will reach out to Chairman McAuliffe to advocate more on our issues.

ADAPTers demand Illinois Governor Bruce Rauner to end his institutional biased agenda

By Azi Nas
Chicago ADAPT

Whenever Chicago ADAPT is having a hard time securing a meeting with the governor of Illinois, we know exactly what to do. We call in ADAPTers from other cities and they help us shut down the James Thompson Center, where the governor’s Chicago office is located.

In 1992, hundreds of ADAPTers blocked entrances, escalators and elevators at the Thompson Center and Chicago ADAPT secured a meeting with Governor Jim Edgar. The same thing happened in 2007 and Chicago ADAPT secured a meeting with Governor Rod Blagojevich.

And the same thing happened again today, April 11, 2017. ADAPTers from Wisconsin and Texas helped Chicago ADAPTers storm and again take over the Thompson Center. After a three-hour standoff, staff for Illinois Governor Bruce Rauner scheduled a meeting for Chicago ADAPT and Rauner for Friday April 14 at the state capitol in Springfield.

This is a huuuuuuuuuuuuuuuuge victory! Rauner took office more than two years ago and repeated attempts by Chicago ADAPT to to meet with him have failed. But today, as about 100 spirited members of ADAPT and SEIU occupied the first floor of the Thompson Center and held their ground, staffers for Rauner sent a message down asking for a meeting with ADAPT leaders. Ryan McGraw, Susan Aarup, Emmanuel Camargo and Mike Ervin we chosen to represent ADAPT. In the meeting, the cordial staffers said they were getting many complaints from building tenants and visitors about the protest. So the ADAPT representatives said everyone would happily leave the building in exchange for a meeting with Rauner. The staffers then offered the Friday appointment.

And the rest, as they say, is history. It was a beautiful illustration of the power of ADAPT. Rauner is a billionaire who made part of his fortune owning a chain of nursing homes. He loves projecting the image of a tough guy who won’t back down from his agenda. But when ADAPT shows up in force, even Rauner must yield.

The ADAPTers who meet with Rauner will tell them how much we cherish the Home Services Program, through which the state pays the wages of the assistants we hire to help us in our homes. We will tell him how disabled people get trapped in nursing homes and how difficult it is for them to get out. We will tell him how his agenda, which favors wealthy people like him above all, keeps disabled people locked up in institutions. We will present him with a list of demands.

What a great day! Free our people!

Philly ADAPT Housing Protest on Mayor

Thurs, 7/26/18 Philly ADAPT Housing Protest on Mayor

Last Thursday, on the anniversary of the ADA, at 10:30 in the morning, 25 members of Philly ADAPT stormed the back entrance of our City Hall and it took over – Business As Usual, Is Not Gonna Happen! At first the new city’s ADA coordinator, Daniel Lopez (some of you may recognize the name) came to try to appease, but we came to demand: Mayor Jim Kenney, any money coming into the City for housing, at least half need to go to people living at and below 30% AMI, which is around $33,000 a year, and below – which is most of our community living on SSI and SSDI, where people live on $9,000 – $15,000 a year. We came to see the Mayor and no one else, this administration has ignored our community since they came to power – We came to demand for Affordable, Accessible, Integrated Housing, and we weren’t going to leave without a commitment!

After two deputy mayors and a few staffers came to try to, “hear your (our) demands,” and “this is the first we ever hear about this,” we saw an opening an took over every door in sight! A few hours of back and forth with Mayor Kenney’s staffers and bump ups, including a city staffer flashing his phone’s light inches in one of our members face, Michelle McCanddless, who gets seizures, and violently jerking her powerchair out of the way as she was blocking the door to this guy’s working space (video link below), we took off, NOT! Philly ADAPT chanted, We’re ADAPT, We’ll Be Back! left and went around to the main entrance, squeezed by security without them noticing -go figure- and took over the four elevators and the stairway.

We chanted for 7 hours all together, Who Do We Want, Mayor Kenney, When Do We Want Him, NOW; and What Do We Want, HOUSING, When Do We Want It, NOW!

Philly ADAPT has been demanding for Affordable, Accessible, Integrated Housing for decades! And, now we have more than 88 thousand people on waiting lists in our city. Mayor Kenney never came to see us, even though in the street he’d shake our hands, and instead had his police arrest 11 of us. Germán Parodi was the first they arrested, and instead of directing him where to go, two tall cops just grabbed him out of his chair and carried him away, then held him up in the air for a while, until they figured out Germán kinda really DOES need his chair, so they brought it and put him back on it. Obviously, they did not know what they were doing at first, but they told the other 10 ADAPTers that they were under arrest and asked them to move toward the processing area one by one. Outside, the folks that had camped by the entrance of City Hall for three weeks demanding AbolishICE welcomed us out, cheering us on.
Mayor Kenney has now arrested Philly ADAPT for demanding Affordable, Accessible, Integrated Housing – stay tuned ADAPT, more arrests coming from our Chapter, or a commitment from the Mayor for Affordable, Accessible, Integrated Housing!

Pictures from the action
Video from the action